Fundraiser success for children’s hospital

The community of Whitegate has rallied around the parents of four-year-old Andrew Burke, who suffers from a rare condition known as neuphratic syndrome, and in doing so raised almost €5,000 for the Temple Street Renal Play Fund.

Andrew was diagnosed with the condition in October 2008 and his mother, Leanne Lyons, explained what it has been like for the family and acknowledged the great support they have received from the people of Whitegate.
“Andrew has neuphratic syndrome, which basically causes his kidneys to leak protein, which leaks into his urine. When this happens, it causes him to retain fluid and swell up, so sometimes he could have four kilos of fluid on him. If this happens, he has to go to Temple Street Children’s Hospital in Dublin and he gets an albumin infusion to basically squeeze him dry again. We’d never even heard of it until the day he was diagnosed. His legs had started to swell but then it went down and one morning his eyes were swelled and I thought it was an allergic reaction so I gave him an antihistamine but it didn’t bring it down. I brought him to the doctors and then they sent him to the Regional. He was diagnosed there with neuphratic syndrome,” Leanne explained.
The course of treatment involves prolonged medication but if Andrew can remain protein-clear for five years, then there is a chance it wouldn’t come back again. However, the problem is trying to keep him protein clear.
“He’s restricted in his diet. The way the doctors described it to me was that your kidneys are like a sieve and in a sieve, you’ve got small holes. But what happens with Andrew is that the holes in his kidneys are getting bigger and are letting all the proteins through and are not filtering back through his kidneys and into his blood, so he’s not absorbing it. At the moment, they’re trying to control it with different medications but eventually he is going to end up having a biopsy to see how severe it is. If he has a biopsy, there’s a chance that it can kill the kidney and if that happens, he’ll have to go on dialysis and he’ll be on the kidney transplant list,” she outlined.
Andrew is coping well however, despite having to visit Temple Street 11 times in the past year. He remains upbeat and in brilliant form according to his proud mum and it doesn’t even bother him too much having to go to hospital, as he is well acquainted with all the nurses and doctors who, according to Leanne, have him “spoilt rotten”.
Leanne and her partner, David have acknowledged the great support that the children’s hospital has given to Andrew.They see the numerous children in the renal unit who are also benefiting from their great work and in the spirit of giving something back, they organised a fundraiser in Whitegate recently.
The sponsored waxathon and head shave took place in the Half Barrel Bar, where more than 20 local volunteers, mainly men, participated by getting their chests, legs or underarms waxed. Meanwhile, two local men and a local woman also shaved their heads. The events raised nearly €5,000.
“The money goes to all the children who go up there for dialysis. The fund is used to get schoolwork for them or if they can’t get out of bed, then to get them portable DVD players and DVDs. Those on dialysis are on it for 10 hours a day and with young children, it is difficult to keep them still and entertained. Andrew hasn’t had to have dialysis but there is a worry that he may need to in the future.
“His condition is very rare and his programme of treatment started with steroids. He’s still on steroids but he’s also on another drug and he’s also on blood pressure medication, which is meant to help keep the protein away.
“If he swells he will suffer from high blood pressure so he has to have that. It’s hard for us when we go up to hospital and he has to go on the albumin infusion because he’s hooked up for four hours and it’s hard to keep him still. We also have to look after our little girl, Gemma. The support locally has been fantastic and people really got behind us we are so grateful for that,” Leanne concluded.