I wrote a while ago about my nephew, Dylan and his fight against Nephrotic Syndrome, a rare disease that affects his kidneys.
A BRAVE little boy battling a rare disease that causes his immune system to attack his kidneys is preparing to have chemotherapy.
Four-year-old Dylan Davies-Abbott, who was diagnosed with Nephrotic Syndrome a year ago, will undergo the eight-week treatment from February 4 with the aim of limiting the number of attacks he has.
His mum Sam admitted it was a “difficult decision” to go down the chemotherapy route as there is a small risk of Dylan becoming infertile. But having had several relapses at the end of last year, Dylan has now been classified as “steroid dependent”, which is the medication used to treat his condition. Steroid use can have damaging long-term effects on his bones and growth, and could also result in him becoming vitamin B deficient.
Nephrotic Syndrome, which is most common among boys aged two to six, affects about 10,000 people in the UK. When the immune system attacks the kidneys, it damages them and causes large amounts of protein to go from the blood into the urine.
When this happens, it can cause Dylan to become swollen and very tired, as well as causing scarring to his kidneys which could one day lead to him requiring a transplant.
Sam, from Holywell, North Wales, said: “The ideal scenario with the chemotherapy is that we would get a long period of remission without medication and to get Dylan off the steroids.
“When he has a relapse he does respond to the steroids within five or six days. “We’re grateful that it works but it’s not a long term solution.”
She added: “We don’t know if the chemotherapy will work but it’s a better option as it’s a short-term intervention.
“It’s been a difficult decision. Potentially it could have big effects on him.
“There is a very small risk of him becoming infertile.
“I know the risk is small but it’s still a risk. It’s impossible to say if the chemotherapy will work, it’s very much trial and error.”
Sam had taken Dylan to hospital in January last year with a suspected sickness bug – what she wasn't expecting to hear was that her son actually had a rare illness and that he may need a kidney transplant in the future.
“They don’t know what causes it and we don’t know why it was triggered in Dylan because he had no underlying health problems”, she said. “It came as quite a shock to us.
“The worst case scenario is that he could at some point need a kidney transplant but that wouldn’t cure him long term because the problem isn’t with his kidneys.
“We hope he might grow out of it in late adolescence – maybe 15 years or so.”
Since Dylan was diagnosed Sam and her husband Ian have been fundraising for the Nephrotic Syndrome Trust who carry out research into the illness.
On March 17, Ian will run the Liverpool Half Marathon to raise awareness of his son’s condition. Sam said: “When we found out we didn’t know any one who had heard of it.”
For more information visit nstrust.co.uk/pages/home.
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Next week, Dylan, who is four, is starting chemo.
His mum, Sam, will be giving an update about NS, Dylan's treatment and how it affects his education on my Special Needs Jungle site as part of a series of articles in the run up to Rare Disease Day.
In the meanwhile, this is an article in the Flintshire Chronicle about him.
***
Four-year-old Dylan Davies-Abbott, who was diagnosed with Nephrotic Syndrome a year ago, will undergo the eight-week treatment from February 4 with the aim of limiting the number of attacks he has.
His mum Sam admitted it was a “difficult decision” to go down the chemotherapy route as there is a small risk of Dylan becoming infertile. But having had several relapses at the end of last year, Dylan has now been classified as “steroid dependent”, which is the medication used to treat his condition. Steroid use can have damaging long-term effects on his bones and growth, and could also result in him becoming vitamin B deficient.
Nephrotic Syndrome, which is most common among boys aged two to six, affects about 10,000 people in the UK. When the immune system attacks the kidneys, it damages them and causes large amounts of protein to go from the blood into the urine.
When this happens, it can cause Dylan to become swollen and very tired, as well as causing scarring to his kidneys which could one day lead to him requiring a transplant.
Sam, from Holywell, North Wales, said: “The ideal scenario with the chemotherapy is that we would get a long period of remission without medication and to get Dylan off the steroids.
“When he has a relapse he does respond to the steroids within five or six days. “We’re grateful that it works but it’s not a long term solution.”
She added: “We don’t know if the chemotherapy will work but it’s a better option as it’s a short-term intervention.
“It’s been a difficult decision. Potentially it could have big effects on him.
“There is a very small risk of him becoming infertile.
“I know the risk is small but it’s still a risk. It’s impossible to say if the chemotherapy will work, it’s very much trial and error.”
Sam had taken Dylan to hospital in January last year with a suspected sickness bug – what she wasn't expecting to hear was that her son actually had a rare illness and that he may need a kidney transplant in the future.
“They don’t know what causes it and we don’t know why it was triggered in Dylan because he had no underlying health problems”, she said. “It came as quite a shock to us.
“The worst case scenario is that he could at some point need a kidney transplant but that wouldn’t cure him long term because the problem isn’t with his kidneys.
“We hope he might grow out of it in late adolescence – maybe 15 years or so.”
Since Dylan was diagnosed Sam and her husband Ian have been fundraising for the Nephrotic Syndrome Trust who carry out research into the illness.
On March 17, Ian will run the Liverpool Half Marathon to raise awareness of his son’s condition. Sam said: “When we found out we didn’t know any one who had heard of it.”
For more information visit nstrust.co.uk/pages/home.
