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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.”  


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

Kidney patients may be eligible for transplant – Bismarck Tribune

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People unable to live without dialysis or a new kidney are candidates for transplant. These patients — who are in end-stage kidney disease — may receive a kidney from a living or deceased donor. In the United States, the most common causes of end-stage kidney are diabetes and high blood pressure, though there are many more. About 100,000 people are waiting for kidney transplants in the U.S.
How do deceased adults become donors?
After being pronounced dead, adults who have identified themselves as donors have their kidneys harvested for transplant. Most transplanted kidneys come from this process known as deceased donor transplant. The family of a deceased person can also agree to organ donation.
How are living adults able to be donors?
Family members may be able to donate one of their kidneys through living transplant. The same is true of unrelated people who are a good match. Potential donors are extensively screened physically and psychologically. These living donors have unchanged life expectancy and quality of life.
What’s the process involved in finding a new kidney?
Placement on the transplant list involves extensive evaluation — diagnostic and psychosocial. Initial blood tests help determine urgency of kidney need and to establish blood chemistries essential in matching to a potential donor. Further blood evaluations are designed to lessen the chances of eventual organ rejection. A potential recipient will undergo a further battery of tests to gauge overall health. Though many are determined based on the individual, these diagnostic tests can include:
• Renal ultrasound — non-invasive test utilizing sound waves to produce a picture of the kidney to determine its size, shape and check for masses and cysts
• Kidney biopsy — removal of tissue samples to identify the presence of cancerous or other abnormal cells
• Intravenous pyelogram — series of X-rays of the kidney, ureters and bladder looking for tumors, abnormalities or obstructions
A team determines candidates for transplant based on the evaluations outlined above. People accepted are listed on the United Network for Organ Sharing registry.
What must a recipient do after transplant?
Some combination of medication will need to be taken for the life of the transplanted kidney. These medicines reduce the strength of the immune system, essentially tricking it into not attacking the transplanted organ. The patient’s health care team can manage side effects that may develop from the anti-rejection drugs.
What’s the earliest age a person can become a recipient?
A child older than 2 years can generally receive an adult kidney.
What can I do to become a donor?
April marks Donate Life Month, an ideal time to register as a donor. To learn more, visit donatelifemidwest.org.

The Organ Project Launches National Campaign to End the Transplant Waitlist – Yahoo Finance

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First set of television and radio spots will launch in Ottawa, then rollout across North America

OTTAWA, April 14, 2017 /CNW/ – The Organ Project, a major philanthropic initiative founded by Ottawa Senators owner Eugene Melnyk today announced the launch of a series of television and radio spots aimed at raising awareness about the life-saving importance of organ donation. 

The first set of thought-provoking television and radio spots will launch in the Ottawa region and will begin airing on Saturday, April 15. Thanks to the generosity of Bell Media, the radio spots will air on MAJIC 100, Ottawa’s New Country 94, 580 CFRA and TSN 1200. The television spots will be broadcast on CTV Ottawa’s CJOH and CHRO, Rogers Sportsnet and the Ottawa Senators’ in-arena programming during the Stanley Cup playoffs.

A national and North America-wide rollout is planned as well as efforts to engage with all major North American professional sports teams within the National Hockey League, the National Football League, Major League Baseball, the Canadian Football League and Major League Soccer.

“April is Organ Donation Awareness Month across Canada so I feel there is no better time to launch this significant public awareness campaign focused on highlighting the life-saving importance for all of us to register to be organ donors,” said The Organ Project’s Founder Eugene Melnyk. “This campaign is our first major step towards ending the organ donor waitlist where people of all ages wait desperately for life-saving transplants. This campaign is intended to bring organ donation to the forefront and by doing so encourage as many individuals as possible to have the all-important conversation with family and friends about giving the gift of life by becoming an organ donor.”

Celebrity Morgan Freeman’s universally recognizable voice is featured in several of the television and radio spots which are aimed at taking the public on various thought-provoking journeys to highlight the life-saving importance of being an organ donor and how it can help end the transplant waitlist where 4,600 Canadians currently wait in desperate need of transplants.

The television spots were first previewed on March 31, 2017 when The Organ Project hosted a sold out and highly successful inaugural fundraising gala featuring seven-time Grammy Award winner Carrie Underwood. The highly anticipated gala raised nearly $1.4 million that will be invested into a number of important programs and policy initiatives including today’s launch of The Organ Project’s national public awareness and education campaign. 

Additional television spots will be released as part of the national and North America-wide rollout of this campaign.

About The Organ Project

Launched in February 2017 by Eugene Melnyk the Owner and Chairman of the Ottawa Senators Hockey Club, The Organ Project is a charitable organization focused on ending the organ donor wait list for transplants. In Canada, more than 4,600 people are in desperate need of a life-saving organ transplant. The Organ Project aims to make traditional organ donor registration simpler, efficient, and more accessible because a single organ donor has the power to save eight lives. By working with federal, provincial and state governments, The Organ Project will also explore policy changes to make real and practical system improvements to organ donation and transplantation across Canada and the United States. For more information on The Organ Project please visit our website at www.theorganproject.net or follow us on Twitter at https://twitter.com/theorganproject

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.

Mom of teen who died suddenly after football injury meets with transplant recipients – WJBD Online

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Mom of teen who died suddenly after football injury meets with transplant recipients

ABC News(NEW YORK) — It was an emotional day recently for Cassondra Singleton, who met with some of the recipients of organs from her teen son who died last year after a football injury.

In November 2016, Aaron Singleton, 15, a straight-A student at Joshua High School in Texas, suffered seizures after taking a hit during a game. He was rushed to the hospital, where doctors reportedly discovered he had a blood clot and swelling in his brain.

The next day, he was taken off life support after doctors determined he was still unresponsive. Aaron Singleton’s organs were donated.

On Tuesday, Cassondra Singleton of Burleson, Texas, was joined by her family and fiancé, Robert Gray, as she met with Brenda Florez, 61, of Carlsbad, New Mexico; Dustin Earley, 32, of Denison, Texas; and Mike Norton, 62, of Houston, Texas, and their close relatives at Baylor Scott and White All Saints Medical Center in Fort Worth, Texas.

Florez received a kidney and liver; Earley, a kidney and pancreas; and Norton, a heart.

“It’s a sad experience but it’s also a happy experience. It’s something that from the very beginning I always wanted to take place,” Florez said. “I always wanted to meet the family. When they contacted me and said that they were ready to meet the recipient families, I said, ‘Yes.'”

On Tuesday, Singleton said that Aaron would be happy to see how he’d given life to so many others.

“It’s really emotional. It’s happy because [Brenda] gets to carry on, you know, with her life and with her kids and husband and family and friends and everything,” Singleton said.

She went on, “You know, it’s a little sad. It’s very sad. Because I don’t have my son but her and others, Brenda and others get to live life to the fullest and that means a lot to me and my family.”

Norton brought a stethoscope so that Singleton and her family could listen to the new heart beating inside his chest.

Born with a heart defect in which the heart loses elasticity, Norton said he’d ended up on the transplant list after he was diagnosed with congestive heart failure.

“Everything I do for the rest of my life, Aaron is taking me there,” said Norton, a landscape photographer. “I feel him every day.”

Copyright © 2017, ABC Radio. All rights reserved.

Father, daughter celebrate 50th anniversary of kidney transplant – 6abc.com

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A father and daughter are celebrating a milestone, a kidney transplant 50 years ago that changed the course of medicine.Ted Lombard gave his then-13-year-old daughter Denice a kidney to save her life.

Denice and twin sister Diane were born with a genetic defect which causes kidney failure.After Diane died at age 7, doctors wouldn’t put Denice on dialysis, saying it was too new and risky.

Her mother convinced UCLA Medical Center to do a living-donor transplant. It was experimental at the time.

“I lost one daughter and I just didn’t want to lose another,” said Ted.

Now, transplants – including those from living donors – are being done every day.

But the Lombards want everyone to consider becoming a living donor.

There are 100,000 people on the waiting list now and a new name is added every 14 minutes.The Lombards are believed to be the oldest living donor pair in the United States.

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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.

Parents of boy who once received transplant donate his organs – The Star Online

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Deng Jun kisses her son in hospital. Photo: Handout

Deng Jun kisses her son in hospital. Photo: Handout

HONG KONG: The parents of a 15-year-old boy, who once received a cornea transplant, donated his organs after he died on Saturday, the Chengdu Commercial Daily reported.

Deng Jun, the mother of Zhang Junyan, who died from encephalitis, decided to donate his liver and kidneys to save three other critically ill patients at Sichuan Provincial People’s Hospital in southwest China.

“He was very young, and until now has not been able to contribute to society. Donating his organs is his chance. I want to make his passing away more meaningful,” Deng said.

An accident three years ago gradually claimed Zhang’s sight in his left eye, but a cornea transplant in March last year restored his vision.

“Zhang cherished his restored eye very much, and carried eye drops wherever he went,” Deng said.

But, on March 14, Zhang came down with a headache and fever and was treated at a nearby clinic, which gave him some medication and sent him home.

Without prompt and accurate treatment, Zhang’s symptoms quickly deteriorated. When he was unable to speak properly two days later, Deng sent him to a hospital in Nanchong, where he was diagnosed with suspected meningitis and was transferred to the more advanced Sichuan Provincial People’s Hospital.

Four days later, Zhang lapsed into a coma and it was confirmed that he had viral encephalitis.

On March 28, doctors informed Zhang’s parents that their son could not be saved.
Zhang’s organs were recovered and he was buried in Chengdu on April 1. – South China Morning Post

Senate Panel Advances Bill On Transplant Discrimination – CBS Philly

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HARRISBURG, Pa. (CBS) — A state Senate panel has advanced legislation intended to stop organ transplant agencies from discriminating against people with disabilities.

The bill, sponsored by Philadelphia Democrat John Sabatina, cleared its first hurdle by passing out of the Senate Judiciary Committee. It would prohibit organ transplant discrimination against patients on the basis of physical, mental or developmental disability.

“Senate Bill 108 has been named “Paul’s Law” on behalf of Paul Corby, a young man from Pottsville who needs a heart transplant, but is experiencing this very type of discrimination,” Sabatina said. “He was denied a life preserving heart transplant during the summer of 2011 because he has autism and psychiatric issues.”

Sabatina says that kind of discrimination is “inhumane and unacceptable.” He says right now, people with those types of disabilities can’t even get on the waiting list for transplant. He says his bill does not guarantee them an organ but simply allows people with special needs to get on the list.

These 7 hospitals have the best pediatric organ transplant outcomes – Becker’s Hospital Review

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Nearly 2,000 children ranging from newborns to 17-year-olds received organ transplants in 2015, and nearly 2,000 children are still on the waitlist, according to HHS’ information on organ donation and transplantation.

Most children under 18 who need an organ transplant are waiting for a liver, heart or kidney.

The Scientific Registry of Transplant Recipients uses data collected from other organizations to assess outcomes of centers that perform pediatric liver and heart transplants. SRTR has two rating systems for its outcomes assessment score:

  • A three-tier rating system assigns hospitals a “better than expected,” “as expected” or “worse than expected” score based on risk-adjusted assessment of first-year success (being alive with a functioning transplant one year after surgery).
  • A five-tier outcome assessment system, which is in beta mode, that assigns hospitals a score of one (the worst) to five (the best) based on how many patients stay alive with a functioning transplant one year after surgery.

In the three-tier system, just one hospital earned a “better than expected” for pediatric liver transplants: Children’s Hospital of Pittsburgh at UPMC. No hospital earned a “better than expected” for pediatric heart transplants.

In the five-tier system, seven hospitals earned a five score for pediatric liver or heart transplants. Those hospitals are listed below, in the order from SRTR.

Liver

Children’s Hospital of Pittsburgh at UPMC

Jackson Memorial Hospital University of Miami School of Medicine

Boston Children’s Hospital

Children’s Medical Center of Dallas

Heart

UF Health Shands Hospital (Gainesville, Fla.)

NY Presbyterian Hospital/Columbia University Medical Center (New York City)

Children’s Hospital Colorado (Aurora)

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