1 Jul 2012

My nephew, Dylan's daily fight against his rare disease - please help raise awareness

This is a post to highlight a rare disease that has affected my young nephew, Dylan who lives in North Wales. He was diagnosed with a kidney disease, Nephrotic Syndrome, earlier this year and his mum, my cousin Sam Davies-Abbott, is trying to raise awareness and funds to help find a cure. Here Sam's tells their story. 


My young son was a welcome addition to our family making us the average 2.2 family (make that two cats and no dog) along with his big sister.  Life was full of fun and laughter, along with the usual ups and downs.  
Dylan before he was ill
But things changed significantly for us on 15th January of this year when we took our three year old little boy to hospital as his face and body had begun to swell up.  
The A&E doctor tried to fob us off with it being viral, but a response from myself regarding his non-committal diagnosis soon saw us heading down to the children's ward to see a paediatrician. 
That afternoon, we we were shocked to be told that our son had something called Nephrotic Syndrome - WHAT?  Apparently the filtering system of our son's kidneys does not work properly and allows protein to move from his blood to his urine.  This results in the oedema which had prompted us to be concerned.  
For some unknown reason our son's immune system now attacks this filtering system instead of any infection which has triggered it. The kidneys become scarred when they are attacked and the extent of this can be significant.  The cause of NS is unknown and consequently there is no cure for it.
NS is a rare syndrome with only 10,000 sufferers in the UK, with the majority of them being young children.  There are two main types and we desperately hope that our son has the type called Minimal Change, which would hopefully mean that he will grow out of it in early adulthood and suffer no longer term damage to his kidneys.  The other type FSGS results in dialysis and kidney transplants, often within a relatively short period of time. The ultimate cruelty of this syndrome is that in a high percentage of transplants the NS returns to attack the new kidney.
Our son has already relapsed twice and is now classed as a frequent relapser - we are unsure what this means for the severity of the journey that NS will take him on (and us as a family).  
He is currently prescribed high doses of steroid medication to suppress his immune system and stop it from attacking his kidneys.  If he relapses as the dose reduces, or shortly after he finishes taking it, he will be classed as steriod dependent and will have to undergo chemotherapy to try to remedy this dependence.  As toxic as these treatments are (and as horrific as the side effects can be) we are grateful that he continues to respond to them. The alternative is too scary to contemplate...
Dylan while taking strong steroids to fight his illness
Everyday life feels as though we are walking on egg shells waiting for his next relapse.  There is absolutely nothing that we can do to prevent it.  We all follow a salt-free, low-saturated fat diet (much healthier for us and so much tastier!) to try and help his kidneys to work at their optimum level in the hope that future relapses will be less severe for him.  We are slowly learning to enjoy each day that he is well and we are trying not to spend too much time worrying about about tomorrow may bring. 
We have tried to protect our young son from knowing when he has relapsed, explaining increased medications, injections and hospital visits as preventative treatments rather than reactive to NS.  
A few days ago we were discussing a sponsored walk which we have arranged to raise awareness of NS (with monies raised being donated to the Nephrotic Syndrome Trust and research into a cure) when he suddenly turned to me and said, every matter of fact, that "I might be poorly forever Mum".  My heart shattered into a million pieces.... 
My son's name is Dylan and he is three.

You can find Sam's Just Giving page here
And the Nephrotic Syndrome Trust here