Superheros

It's hard to believe that we have been a member of SWAN UK for 5yrs! I honestly would be lost without them as when we realised that Roo wasn't the "typical" patient who would receive a diagnosis for his issues and treatment to help we were left in limbo as there were no support for undiagnosed children until I found out about SWAN UK. Over the 5yrs I have met some amazing families and their superheros, made friends, gotten support during the dark times , returned the support to others, watched in amazement and wonder at the little swans achieving the impossible and sharing the sadness when some swans have left this world. We are one big family of superhearos from all corners of the world. This is why its so important to raise awareness of undiagnosed genetic conditions and raise funds to keep the support going. This year sees the 5th Undiagnosed Childrens Day and the theme this year is SUPERHEROS!

Roo is our superhero for everything he has been through...since birth he has had struggles that he has tried so hard to overcome, he has endured umpteen amounts of blood tests & cannulas where he has to be physically restrained by 4 people as he seems to develop some super strength during those times. It's absolutely heartwrenching to see him pinned down, screaming in distress as he doesn't understand why he has to have them done, he has had several GAs which also are traumatic for him, MRIs, lumbar punctures, scans etc over the years to try and find a reason behind his issues. 

When he was 2yrs old he started to scream a lot at night as if in pain. ..no one could find a reason...the only thing I could do was give him painkillers and hold him in my arms and rock him for hours on end...sometimes he couldn't bear to be touched so all I could do was sit by him to show him I was there...a yr later he finally showed a new symptom which was swelling in eyes which resulted in an urgent admission to hospital and getting diagnosed with IIH (idiopathic intercranial hypertension ). It broke my heart to realise that he was suffering excruciating headaches due to the pressure in his brain but because he was unable to communicate what was wrong he suffered for a long time. Thankfully the treatment worked and within a year he was in remission and remains in remission to this day. There is always the fear that it will come back.

Being undiagnosed has meant we have had to fight for support and therapy as a baby but thankfully he went to a brilliant sen nursery before going to mainstream nursery & school with 1:1 & he gets amazing support from them as he isn't the first undiagnosed child to go there. But there are still situations where we have to fight for support because we cannot explain what is wrong with him, we can only list all the symptoms he has. There have been many occasions when we have gone out and had people come up to us saying " what's wrong with him" or we get people come up saying " is he a dwarf (we got this all the time when he was a baby/ toddler) , is he autistic, does he have so and so syndrome"  and they look confused when we say "we don't know what he has wrong with him".

A mutation was found on the DDD study but they know absolutely nothing about it and so cannot tell us what it means, whether its the cause of his difficulties or what prognosis it has for his future so we remain undiagnosed until they research into the gene and hopefully more children in the world are found with the same mutation.

The past few months have been a bit hard for Roo as he hasnt been himself, there is something not right but as he is unable to communicate to me whats wrong its like finding a needle in a haystack...It will take time to get to the bottom of it. This is why he is my superhero because he could be in pain but cannot tell me he carries on as if its normal to be in pain when it isnt. He is simply amazing in how some days he just puts a smile on and keeps going.

It's not just Roo who is a superhero - his brothers & sister are also superheros.

His sister Faith was a swan for the first 14mths of her life until she got a rare diagnosis of Waardenburg Syndrome so she has her own issues which make life a bit harder for her but luckily she gets amazing support from various professionals.

Leo & Lucas are both superheros too because since Roo came along their lives have become more chaotic and they have spent more time in waiting rooms at hospitals than other children would , they have had to come home early from holidays, outings cancelled, being sent to other members of family to be cared for during hospital stays / appointments,  have had their belongings ruined because Roo doesn't understand. They also have had to endure the stares and comments from others. Leo has had it worse as he was bullied for a while due to having  a disabled sibling and its changed him in many ways.

But despite all the hardships his brothers are super helpful around the house , very caring, patient (sometimes!), supportive and really independent in that they can do a lot more that children of their age can do. They both make a fab cup of tea for me in the mornings when I've had a rough night with the younger two.

Roo with Lucas & Faith...Leo is a typical teenager and refused to have his pic taken or to dress up!!

Every swan child & their siblings are all superheros who are fighting their own unique battles and making their own journeys and they deserve to be recognised not only on 27th April - Undiagnosed Children Day but on every day of their lives.