Tag Archives: Liver

Facing inevitable liver transplant, young girl didn’t need to look far for a living donor – The Denver Post

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Peri Erickson, all 25 pounds of her, turns to her mother in the hospital exam room, curls her right arm in the air and demands: “Feel my muscle.”

Claire Erickson gently pinches the flesh of her daughter’s slender biceps and smiles. “Dang, girl, you must be working out,” she says.

At 3, Peri hasn’t been hitting the gym, but she’s definitely feeling stronger. On March 21, she underwent a liver transplant at Children’s Hospital Colorado that has helped solve medical problems that began at birth with her diagnosis of biliary atresia, a rare and life-threatening disease of the liver and bile ducts.

And though her condition wouldn’t have placed her high on the list of patients seeking potential deceased liver donors, Peri took a different route. She found a living donor — and she didn’t have to look far.

“I was the first one tested and, lo and behold, I was a match, so we didn’t have to continually look for someone,” says Claire, whose family over the past three years has shuttled Peri to doctor visits from their home in Red Lodge, Mont. “It doesn’t always work out like that for everybody.”

Peri and her mother participated in only the second pediatric live-donor transplant this year performed through a partnership between Children’s Hospital Colorado and the University of Colorado Hospital.

But Dr. Michael Wachs, the surgical director of abdominal transplantation at Children’s who performed Peri’s surgery, says several other families have expressed interest and he hopes eventually live donors will figure in 30 to 40 percent of the hospital’s pediatric transplants.

“Babies are harder to transplant with the current (deceased) donor pool,” says Wachs, who has been part of the live-donor cooperative between Children’s and University hospitals since its 1995 inception. “To compete for a portion of an adult liver, she would have to have been much sicker to be higher up on the list. Live donation allows you to bypass the list.”

Live donation also offers the advantage of familiarity with the donor that gives doctors a clearer view of the liver’s quality ahead of time. There’s also an ability to control the timeline of the surgery so it can be done at the optimal point for both donor and recipient.

By dodging the uncertainty of the waiting list, recipients sidestep a donor pool that has changed dramatically over the past 30 years, Wachs notes. Young donors are fewer. Most tend to be in their 50s or 60s and often overweight, with potentially less healthy organs.

They may still be viable donors for other adults, but in a pediatric scenario where the size of the adult liver would have to be reduced, that could place added stress on the organ.

In Peri’s case, Claire and husband, Justin, have long known that a transplant loomed somewhere in the future.

“We didn’t know at what point it would become a reality,” Claire says. “But probably within the last year we started to talk more seriously about it. Every visit, we felt half a step closer to doing a transplant.”

On a January visit to Colorado, doctors broached the idea of the live-donor route. Justin, a supervisor for a road construction company in Montana, arranged to stay in Colorado for the surgeries and only recently returned to their home in Red Lodge with Peri’s older brother Shay, 5.

But there was little doubt that Claire would be the donor.

“I knew it would be me,” she says. “I wanted to do it ever since live-donor was an option. I know I’m resilient, my body is healthy, and I wanted to do this for her. My husband is the breadwinner, and having him missing out on work would have been a scary process. But we definitely had friends and family members lining up.”

Potential donors undergo rigorous evaluation in both medical and psycho-social areas, says Dr. Elizabeth Pomfret, the chief of transplant surgery at University of Colorado Hospital who performed Claire’s surgery.

“What’s critical is a compatible blood type — not necessarily identical, but a compatible blood type,” she says, adding that anatomical considerations rank second. “Depending on how big the recipient is dictates how much liver volume we’d need from the donor. In this case, Peri’s a little girl, so thankfully she doesn’t require very much liver volume.”

Data from two types of body imaging were merged and sent to a company in Germany whose software created three-dimensional models that advised where to divide Claire’s liver, how large a portion to transplant and how to approach blood supply.

“It gives us a very detailed road map,” Pomfret says.

She stresses that anyone 18 or older can be a living donor — it’s not necessary to be related or even genetically similar to potential recipients.

“The number of people waiting has outstripped supply, basically,” Pomfret says. “This is a critical option to have available for recipients who would not otherwise make it.”

Fear or uncertainty over the transplant process never figured into the equation, by Claire’s calculations.

“I was so ready to move on and get our daughter healthy, and give her the best opportunity for a normal life,” she says. “Once you let fear and doubt and worry creep in, it can consume you.”

The night before the surgery, Peri was admitted to Children’s, where her parents stayed overnight in their daughter’s room.The next morning, around 5:30, Justin walked Claire across the medical campus parking lots to University of Colorado Hospital, where she would undergo her surgery.

“It smelled like spring out, calm and clear, a beautiful morning,” Claire recalls of the March day. “I felt refreshed and hopeful. I was just ready to do it, anxious and excited about it, knowing she was in the best hands possible and I was, too.”
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. RJ Sangosti, The Denver Post
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. Peri and her mother, Claire Erickson, were at Children’s Hospital for a follow-up exam April 24, 2017 in Aurora.
While Peri was prepped at Children’s, Claire underwent surgery at University of Colorado Hospital — just a short distance away on the Anschutz Medical Campus in Aurora. Pomfret removed a portion of the left lobe of her liver while circulating nurses at both hospitals kept in touch via cellphone to coordinate the transfer.

When the timing was right, that portion of Claire’s liver was put on ice and shuttled over to Children’s to replace Peri’s diseased organ. The transplanted portion will grow right along with Peri, while Claire’s liver will heal and regenerate in a month or two.

Both surgeries went well, although about a week into her recovery Peri underwent a second surgery to correct a blood flow issue before it could damage the liver graft.

At her most recent checkup, she proudly lifts her purple shirt to reveal the wavy scar that extends across her abdomen. Dr. Shikha Sundaram, medical director of the hospital’s pediatric transplant program, is impressed.

“Oh, it’s looking good!” she says, and nods as Claire details the growing appetite — French fries, chicken strips — that has added a pound to the girl’s tiny frame.

Claire notes that her daughter has recently shown an inclination to run, and Sundaram encourages the increased activity.

“Kids listen to their bodies,” she says. “If she’s wanting to run and play, it’s because her body is ready.”

Peri remains on about 10 medications, but slowly those will be reduced based on her blood work. Sundaram cleared mother and daughter to move from their Denver-area quarters to Carbondale, where Claire grew up, so they can visit family and return to Children’s for gradually less frequent checkups.

Before long, they will return to Montana, where Peri can continue her recovery. Wachs estimates her risk of a severe rejection episode that can’t be reversed at “close to zero.”

Claire can see the upside of live-donor transplant reflected in her daughter’s playful eyes.

“I think people don’t know a lot about it,” she says, “but it wasn’t hard to do — especially to save your own child.”
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. RJ Sangosti, The Denver Post
Peri Erickson, 3, underwent a liver transplant in which her mother was the living donor. Peri with her mother, Claire Erickson, and grandmother, Ramona Griffith, left, leave after their appointment at Children’s Hospital for a follow-up exam on April 24, 2017 in Aurora.

Godmother is perfect match for baby boy in need of transplant who was born with two rare liver conditions – KGO-TV

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Eight-month-old Finn O’Sullivan will never remember what just happened, but his parents will never forget.Finn was born with two rare liver conditions — something that happens to one in 50 million babies and the odds of finding a donor in time were nearly as rare.

Finn’s parents scrambled to find a match within their friends and family, all of whom got screened, but none of whom matched up until Finn’s godmother, Sarah, decided to get tested. “I had a feeling I might be the one,” Sarah said. And she was right.”When we found out that Sarah was a match for Finn and she wanted to go ahead, it literally dropped me to my knees. There are no words to ever express my gratitude to Sarah,” Finn’s mother Kate said.

Sarah said she would have it no other way, stepping up for the son of a woman who has been in her life since their childhood. “When I saw Finn after the surgery, I don’t think there’s quite words to express (it). If you’ve seen the photo, I’m in awe of him, completely,” Sarah said after the procedure. “To see the whites of his eyes — he wasn’t yellow any more, even his hair color changed. It was pretty amazing. He’s such a strong person.”

(Copyright ©2017 KTRK-TV. All Rights Reserved.)

Saints superfan, 15, gets vital liver transplant – ESPN

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Super Saints fan receives ultimate gift (6:46)
Saints superfan Jarrius Robertson’s irresistible personality and positive attitude has inspired the team as he fights a chronic liver disease. In late April 2017, Jarrius’ wait for a new liver ended, enabling a transplant. (6:46)

New Orleans Saints superfan Jarrius Robertson underwent surgery Sunday to receive a long-awaited liver transplant, his father, Jordy, tweeted.

Jordy Robertson said the surgery, which he earlier estimated would take eight to 10 hours, went “great,” but the next few days following the surgery were important for his 15-year-old son.

Jarrius, who signed a “contract” last year on “Good Morning America” to become an official “hype man” for the Saints, has become a larger-than-life figure around the team, handing out an award on the NFL Honors awards show with Sean Payton and Harry Connick Jr. earlier this year, among other appearances.

Saints owners Tom and Gayle Benson called Jarrius on Saturday, while Payton and quarterback Drew Brees wished him well on Twitter.

Athletes from other sports, such as women’s soccer player Carli Lloyd and Atlanta Hawks center Dwight Howard, also tweeted to support him.

Robertson battles biliary atresia — a chronic liver disease that affects his physical growth. He has been in and out of hospitals since receiving a liver transplant when he was 1. At one point, he was in a coma for an entire year.

Jarrius Robertson’s father, at hospital, says liver transplant coming: ‘We finally got our hero’ – The Advocate

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Months after Jarrius “JJ” Robertson became a household name for Saints fans and many in Louisiana, he could be seen nervously making his way through the hospital Saturday morning. 

In an earnest video posted to Facebook by his father, Jordy, it was explained that they were there for his 15-year-old son to receive a life-saving liver transplant. Jarrius lives with biliary artresia, a liver disease that slows his growth.

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Jarrius Robertson, or “Lil JJ” as he’s known around here, says he always knew he’d become famous.

“We finally got our hero,” Jordy said, declaring it national JJ day. “As a parent I prayed for this day, that this day would come. So I need everyone to lift us up in prayer, to pray with us.”

The video begins with Jordy speaking, and pans over to JJ walking down the hallway, wearing his signature “it takes lives to save lives” shirt. The normally talkative JJ declined his father’s request to speak during the video. 

Can’t see the video below? Click here. 

“I must say I have a strong son. … We didn’t sleep, we’ve been up all night. We’ve been waiting for this time for 14 years.”

Jordy asked for prayers, and for anyone to post pictures of their shirts in support of JJ.

“This starts a new life for us. … if he’s ready I’m ready,” Jordy said.

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Aleesha set for liver transplant – Anglo Celt

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Sunday, 16th April, 2017 7:08pm

Aleesha set for liver transplant

Aleesha set for liver transplant

The Haddows are waiting for a call that will hopefully transform the life of young daughter and sister Aleesha.

The 11-year-old was born with a condition called extrahepatic biliary atresia. For many people the unpronounceable name could almost conveys its seriousness.

Sitting in the Haddows’ Aughnaskerry living room last Thursday, the medical term spills off Christina’s lips with the casual expertise common of most mothers of seriously ill children.

“There’s no awareness of it,” Christina correctly says of the condition, which can’t be detected during pregnancy.

It only affects one in every 18,000 children. According to Christina, who is married to Lawrence, it’s not a hereditary condition and there’s no known cause for it. And beyond a liver transplant, there’s no known cure.

Aleesha politely sits on the sofa without a whisper or even a fidget as her mother discusses at length the condition which has defined much of her short life. The yellow hue of Aleesha’s skin flags the urgency of the need. Her liver is gradually failing. Her boisterous two-year- old sister Lola, out of concern touches the plaster on the back of Aleesha’s hand covering the point where an IV tube earlier fed an antibiotic in an attempt to quell an infection immediately prior to the interview – one of the litany of  appointments in Cavan General and Crumlin. The Haddows first became aware of Aleesha’s illness within weeks of her January 14 2006 birth.

“My parents said, she was about five weeks old at the time, that they thought she was kind of jaundiced then and there was a slight tinge to the corner of her eyes – a greeny colour,” recalls Christina who, along with Lawrence, has four daughters in total, with Terese (15) and Eliza (12) making up the family. 

A succession of blood tests and a biopsy revealed biliary atresia which Christina explains, means that the liver’s bile ducts weren’t draining the bile from her body.

“As often as she was being bottle fed, what was going into her was coming back out in the nappy,” says Christina. “She wasn’t getting any goodness out of any bottles, plus she started losing weights.”

Still only six weeks old, on March 1 of that year surgeons in Crumlin performed  the ‘Kasai procedure’. Named after the Japanese surgeon who invented the technique, it involves removal of the  gall bladder and, using the area of the liver from which bile should drain and attaching part of the small intestine to the exposed liver surface,  allowing bile to drain.

“When they do the Kasai, some children can get weeks out of it, some can get months, or some can get years, it just depends,” explains Christina.

In Aleesha’s case it proved successful, and she was gradually weaned off medications. Check-ups in Crumlin eventually were scaled back to just once a year.

But after a decade of having the biliary atresia under control, the first sign that anything was awry came last May when it emerged that her blood results “were a little bit off”.

The bacterial infection cholangitis is a complication common after Kasai or liver transplant.

“It usually takes two weeks of IV antibiotics to clear the infection,” says Christina.

From mid-November Aleesha received a series of courses of IV antibiotics to tackle the worsening jaundice. Discharged on December 23, the family had an appointment in Crumlin on February 5 to see if the treatment had been effective.

“Every time she got the bloods done they were showing she was in more trouble, she was getting more and more jaundiced,” said Christina.

Blockage

Doctors sought another liver biopsy to clarify the child’s condition. MRI , Ultrasound, CAT scan and  HIDA Scan eventually confirmed she had a blockage in the liver. “When she got the HIDA scan – it’s a radioactive dye – it was able to go into her liver but it wasn’t able to leave her liver.”

Christina expands: “The liver is still working, but at a very slow pace. They can’t go in to unblock  anything else, because the blockage is in the wee threads and veins deep in the liver… So the only alternative is – they have listed her for transplant.

Did you always know this day was going to come? “Some people have gone into their 20s, even 30s and 40s still with their own, as they call it, native liver with the Kasai. You might never have to get the transplant, and she had been doing so good for a number of years, and Dr Walsh in Crumlin would say about her: ‘She amazes me for a little one who was so sick, how well she has done’. But now in less than 12 months, everything has taken a turn around.”

Since no Irish hospital carries out liver transplants in minors, in late March Aleesha and her mum attended King’s Hospital in London for a transplant assessment. Now all there is to do is wait for a call confirming that a suitable donor liver has become  available and the Air Ambulance will whisk Aleesha across the Irish Sea. 

“The only thing they can do is try to keep it under control. Obviously the longer it goes, the more it scars, and the more it scars the sicker the liver gets.”

She’s still coming to terms with the thought that her daughter will have to undergo such a major operation.

“It was a shock because, I did think it’s not going to happen – it’s an infection somewhere that will be cleared up and she will be fine and we’ll say to ourselves six months down the line, ‘Do you remember all the hospital admissions, but now you’re okay’. But unfortunately not – it took a while to sink in: the only alternative is she needs the transplant.

Time crawls for Aleesha. Aside from her daily trip to Cavan General for antibiotics there’s not much to do. Fear of contracting infections has seen her no longer able to attend Corlurgan National School; home tuition after Easter will come as a relief for the family. Before she took ill, swimming and playing with her Yorkshire Terrier Max and a little bit of football filled her days.

“Seeing my friends,” she replies when asked what she most misses.

“She keeps in touch with them through Skype and Snapchat,” says Christina, “but it’s not the same… everything is at standstill at the minute.”

Another side affect from the illness which Aleesha has to deal with is an itching.

“Her blood would be very rich and she would be constantly scratching her arms and legs,” explains Christina.

Aleesha’ also conscious of her jaundice.

“She doesn’t go out, it’s other kids – a lot are asking her questions colour wise and eye wise, and things like that. She passes no remarks on that now.”

Christina shows commendable understanding to other people’s reactions to her daughter.

“If I bring her into Dunnes, you see other kids peeping around the corner, they don’t know any different, only they see she is a different colour from they are.

“But she’ll get back to herself when she gets fixed. That’s all she wants, isn’t it?

“Um-hmm,” an upbeat Aleesha agrees.

The prospect of that phonecall to fix everything constantly occupies her mum’s thoughts.

“We could get a phonecall at any time – could be tomorrow, could be six months down the line. She is an O blood type, which is common enough, and there will be kids who are sicker before her. It’s whoever is sickest, being a proper match, will get the call.”

Coincidentally when the Celt visits the Haddows, it’s Donor Awareness Week. Christina,who has had a donor card since she was a teenager, is eager to stress the importance of becoming an organ donor. 

“I think there needs to be more awareness, because for a lot of people – unless they have a child belonging to them in some way, who is in need of an organ, it only brings it to mind then.”

Fund raising

Christine’s sister Beatrice Sweeney and her eldest daughter Terese Haddow have started a GoFundIt web campaign to raise as much funds as possible, as no one knows how long Aleesha may be in recovery.

“Everything depends on the child and how they do afterwards. Because you are coming from overseas, they have to be 100% that the child is fit to go back to Crumlin.”

Christine fears they could amass serious debt without help. HSE cover the costs of the medications and the cost of flights for one adult and one child, but it takes time for that to come through. While the Air Ambulance will try to accommodate one or both parents, children take priority and there is no guarantee that there will be room, and they may have to get expensive last minute flights. If in King’s it transpires that the donated liver isn’t a match, the family’s on their own.

“You have to find your own flights back to Dublin, and then the chances are you could come back today or tomorrow and then a day after that get a call again.”

The operation will see the surgeons go back in through the a long white scar from the Kasai operation which stretches across Aleesha’s midriff.  The Celt notes that Aleesha been through a lot in her young life.

“She’s a fighter, aren’t you?”

Christina is focusing on Aleesha’s youth, which the doctors say “stands to her” and is hopeful she will have a “total lease of life after it”.

“At the minute it’s scary,” concedes Christina, pausing to think. “But it’s also exciting. It’s scary when you get the call and think this is it and we’ve got to go.

“We’ll not be negative about it: we’re going to say when we get the call we’ll say, ‘This is it!’”

She adds: “The way I look at it – as hard as it will be for the first few weeks, but after that – anything to get her back to herself and make her well again. It will be exciting that way – because we’ll be able to say, this darkness is behind us now.”  


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To make a donation online, see: www.gofundme.com/aleeshas-transplant

Prayer & Patience Help Girl Survive Liver Transplant – CBS Miami

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MIAMI (CBSMiami) – If you could put a face to bravery, 11-year-old Victoria Rojas would be it.

“With everything I’ve gone through, like this transplant, I was so excited to get the transplant because,” Rojas said before tears welled up in her eyes. “I feel good, it’s just different with this transition from liver disease failure and the actual transplant.”

Exactly one year ago she was a typical 10-year-old, about to finish up the 4th grade, when her mother noticed her skin was looking a little yellow. She took her to the doctor on a Tuesday to get her checked out.

“And then on Friday the doctor called me and said we got the results so you have to go to the hospital to admit her to do more test,” recalled Rojas’ mother Mary Ann.

Victoria was eventually diagnosed with autoimmune hepatitis type 1 liver disease. The chronic disease causes the body’s immune system to attack the liver and cause it to become inflamed, often leading to liver failure.

Her doctors said Victoria’s liver was so bad it was equivalent to that of a person who had been drinking their whole life and she would need a transplant immediately.

The Clearwater family was told she’d receive the best care at Jackson Memorial’s Transplant Institute.

What made the situation even harder for Victoria was that her dad, a military contractor, was overseas when all of this was happening.

“I hated it, I felt very unhelpful, useless, being so far away,” said Victoria’s father Jenaro.

Victoria received word that she had a match just seven days after her father returned home. She underwent lifesaving surgery which was described by her doctor as uneventful.

CBS4’s Tiani Jones asked the 11-year-old how she got through such a tough year.

“Prayer. I also remembered that I would get through it,” she said.

The road to recovery will be a slow one, but the family is grateful that Victoria will be able to return to school, play sports, and have a normal childhood again.

“Victoria is smiling more, walks more, is ecstatic, and is eating more,” says Mary Ann. “She is no longer on pain medication and she is stronger than ever.”

As Victoria recovers, her father feels grateful that he could be by her side during her recovery. In just a few weeks, he is scheduled to once again be deployed for another 10-month stint overseas. He can go now in peace, he says, knowing that his daughter’s health is improving.

Offaly boy undergoing long-awaited liver transplant today – Offaly Express

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Offaly schoolboy, Charlie Lynch, has secured the long-awaited transplant he needs to save his life. His mother, Helen Lynch, has previously told the Offaly Express about her son’s condition, which he has suffered with from birth, and the search for a donor which led her to make a heartfelt public appeal. 

SEE ALSO: Mother makes desperate donor appeal for dying Offaly boy

Charlie is now undergoing the transplant surgery this afternoon as a liver has been donated following the death of a man last night. 

Charlie is being treated in the UK having been moved by his mother from Tullamore. Helen Lynch this morning described her son as “the bravest little man” as she posted a picture of him “all ready for his transplant” to social media.

Helen’s decision to move to the UK was due to the fact that pediatric transplants are not carried out in Ireland and in order to be closer to King’s Hospital if and when a donor liver became available – a situation that has now arisen. 

The eight-year-old’s condition had been worrying his mother, who said she feared his time was running out. He has been waiting three years for a transplant, but is now finally undergoing the surgery today. 


If you have a story for us, sports news, an event happening in your area, or if you want to submit pictures or videos, contact the Offaly Express team via e-mail to justin.kelly@iconicnews.ie, or through our Facebook.

Eudora girl organizes fundraiser for friend’s liver transplant – Lawrence Journal World

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Sam Beckner, of Eudora, fights back tears when talking about the fundraising campaign 11-year-old Rylee Griffin organized for her granddaughter Genevieve Kiene.

Her 3-year-old granddaughter has Alagille syndrome, a rare genetic disorder that has her on a liver transplant list, Beckner said. The disease, diagnosed when Genevieve was just months old, has led to a series of associated medical complications from the toddler’s inability to properly digest food and nutrients, including the calcium needed to strengthen bones.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Rylee Griffin, 11, of Eudora, points to the bracelets she is selling to raise money to help the family of 3-year-old Genevieve Kiene pay for an impending liver transplant. Rylee came up with the fundraising idea when she was inspired by how her young friend remained upbeat despite the problems she experiences from her rare genetic liver condition.

Recently, Genevieve, the daughter of Amanda and Doug Kiene, of Lawrence, broke an arm when she tripped and fell.

“A year ago, she broke her leg and was in a body cast from the waist down for some time,” Beckner said. “Recently, she broke her arm when she tripped and fell. Through it all, that little girl has such great spirit. She draws people to her because of her sweet nature and spirit. She is such a strong little girl.”

Rylee was one of those captured by that spirit when she saw the toddler in her cast at a fitness class Genevieve’s mother Amanda Kiene teaches for Eudora Parks and Recreation.

“My mom goes to those classes, so I met her there,” she said. “She’s always upbeat and smiling even on a bad day. She was smiling when she had a broken arm. I felt bad for her, so I started raising money for her.”

Rylee’s idea was to sell bracelets with the inscription “Faith over Fear.”

“I had another bracelet fundraiser like that with softball, so I knew I could raise money for her,” she said.

Rylee’s mother, Rachelle Griffin, said they ordered 500 of the bracelets, which they are selling for $5. The money will be given to the Kienes to help with that part of Genevieve’s pending $577,000 transplant surgery the Kienes’ insurance won’t cover, she said.

Eudora Parks and Recreation with have a 5K run/walk fundraiser for Genevieve Kiene on April 29. Registration will start at 8:30 a.m. and the race will start at 9 in Eudora. For more information on the event, call 785-542-3434.

Rylee has already sold 265 bracelets, and her mother is confident she’ll have to order more to satisfy demand and her daughter’s sales abilities. Most of the bracelets thus far have been sold to friends, Griffin said. She and Rylee are now planning on mailing bracelets to those who order them by emailing faithoverfear4gk@gmail.com. More information on the fundraiser, Genevieve and Rylee can be found at the Facebook page Faith over Fear – Bracelet Fundraiser for Genevieve Kiene.

The fundraiser is much appreciated and its “Faith over Fear” message is most appropriate, Beckner said.

“The Bible says when we are in fear, we get in God’s way,” she said. “We really have to stay in faith for Genevieve.”

Contact Douglas County reporter Elvyn Jones

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Allexis Siebrecht, liver transplant recipient, hoping to raise money to go to international transplant games – CBC.ca

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Almost two years after receiving a life-saving liver transplant, 13-year-old Allexis Siebrecht is hoping to represent Manitoba at an international athletic competition for kids who have received organ transplants.

Allexis was born with biliary atresia, a rare liver disease that meant she needed a new liver at age 11.

Allexis Siebrecht at The Hospital for Sick Children in Toronto

Allexis Siebrecht, 11, spent a month recovering from a liver transplant at The hospital for Sick Children, or SickKids, in Toronto.

Before the transplant, the condition meant even things as simple as breathing were difficult for her, but not anymore, Allexis says.

“Before I had my transplant I felt, like, really tired, and I felt like I couldn’t walk up any stairs. I was getting sick a lot,” she said. “And now I’m just active and hyper and running and doing all these sports.”

Last year, she competed in the Canadian Transplant Games and brought home some serious hardware — nine medals in swimming, badminton, tennis and track and field. The wins also meant she qualified for this year’s World Transplant Games in Malaga, Spain, where she would be the only Manitoba competitor.

Now, the family is trying to raise the nearly $6,000 they need to get her there.

Connection to other families

The family has started a GoFundMe campaign to raise $5,675 — around half of the total cost of the trip for Allexis, her sister Jersey and mom Liz Siebrecht.

Liz said going to the Canadian version of the games meant a lot to their family. Allexis still keeps in touch with friends she made there.

“When I saw her compete in the Canadian Transplant Games in Toronto it was … nothing short of phenomenal. I was just, like, so in awe and just, ‘Wow, this is amazing,'” she said.

“It would just be such a great experience to experience it again,” Liz added. “When we went to the Canadian Transplant Games in Toronto, we felt a connection there with the other families who have been through the same things that we have went through as a family.”

Allexis Siebrecht, 11, says liver transplant lets her breathe, run and dance2:14

Allexis is already preparing for the tough competition. To stay in shape, she runs with her dog and swims three times a week, she said.

She says she’s excited for the joy of competition, but also the family time she’d spend at the games.

“It’s nice that you can take your family there, and the families can, like, cheer on the transplant recipients,” she said.

“I’m feeling, like, really, really energetic, and really good, and, like, really, really happy. And I’m looking really, really forward to competing.”

Dual live-donor transplant surgery conducted on 2-year-old – Times of India

This was originally published on this site

KOCHI: Grandmother donated her kidney and father donated his liver to save a two-year-old girl who weighed 7 kg, making her the smallest child in the world to have successfully undergone dual live-donor transplant.Doctors who performed the transplant at Aster Medcity said that the organ transplant manual states that a child should weigh at least 10kg for a transplant. Parvathy MS from Kodakara in Thrissur suffered from a rare congenital condition called primary hyperoxaluria type -1, in which the deficiency of a liver enzyme leads to abnormal spike in blood oxalate levels that permanently damage the kidneys.

“There is evidence of successful dual transplant being done on a child weighing 9 kg. But till date, no one has performed transplant on a child weighing 7 kg,” said Dr Mathew Jacob, consultant liver and abdominal multi-organ transplant surgeon, Aster Medcity.

However, the decision for transplant surgery was not immediate. “We wanted to wait till the child’s weight touched 10 kg. But when we realised that we would be risking her life if we waited, we discussed with the girl’s family and decided to go for transplant,” said Dr V Narayanan Unni, senior nephrologist, Aster Medcity.

Explaining their ordeal, Parvathy’s mother Saritha MS said that their daughter was first put on daily peritoneal dialysis when she was four months old. “The dialysis lasted for nearly 20 hours each day. After a year, she had to be put on ventilator and needed daily hemodialysis. But soon doctors said that transplant was the only option and they couldn’t wait longer,” said Saritha.

However, getting a donor, the baby’s size and age was not easy. Therefore, it was decided to take her grandmother’s kidney. But that had its own complications. While the adult kidney is nine and half to 11 cm, that of a child is 4 cm. Also almost half litre blood flows in the adult kidney in an hour, that’s the amount of blood flown in a child’s body. “The solution was to remove her damaged right kidney and place the new kidney. The blood volume in her kidney too had to be increased using highly specialised techniques,” added Dr Jacob.

“Post-transplant surgery in November 2016, the child was in the hospital for 51 days. She has recovered well and now weighs 10.4 kg,” said consultant paediatric intensivist Dr Rajappan Pillai.

Her grandmother, 53-yeear-old Sathi Raghavan added, “I told my son and daughter-in-law that I had to do this for my granddaughter. I am happy now as she able to move and breathe without much pain”.

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