Reggie Milbanhac was born on the 6th of July 2017 @ 4lbs 10 Oz.
Within minutes his excited parents had to deal with the reality that there seemed to be something seriously different about their beautiful baby. No one can be prepared for that sinking heart ache that they felt at this time which should have been the most happiest. All of a sudden life had changed, forever.
Reggie was diagnosed at that time with 'floppy baby syndrome'. From the moment he was born there was constant testing to see what condition he had, ranging from SMA to cerebral palsy. Kirsty and Jimmy (Mum and Dad) practically lived at the hospital with constant appointments and tests. Their tiny little Reggie being prodded, poked and examined all the time, making no noise, showing no emotions and no movement. My hat comes off to these parents, and all parents that have to show such resilience at a time like this.
Each test that Reggie passed gave Kirsty and Jimmy that little glimpse of hope that 'maybe this was a phase' and 'maybe he will lead a normal life'. ' We just want him to be happy and healthy'.
It took over 6 months to finally get a diagnosis which felt like a life time. Within this time Reggie was being fed through a tube, and was rushed to hospital on several occasions where his body wasn't doing its job well enough to protect him from infection.. at some points it was touch and go whether Reggie would be able to battle on.
Reggie was diagnosed with PWS - Prada Williams Syndrome. This of course came initially as a relief, 'at last!' they could finally deal with the issue. Then came the realisation that their little boy would need constant help and would never lead a self sufficient life.
PWS characteristics are: Over eating to an excessive level, Low IQ, Learning Difficulties, Anger, Tiredness, Mobility Issues, Behavioural Issues, Scoliosis and breathing difficulties . It also means Kirsty and Jimmy will need to try and control this behaviour all of Reggie's Life. Part of the low muscle tone means that Reggie, who is now 2 years old, has not got enough muscle tone to stand up on his own or walk.. but 'WE' want to do something about that..
We are raising money for Reggie to have an intensive, bespoke course for children who suffer with the same limitations as him! Its a 3 week course where every day Reggie will have a specialist helping him to develop the skills he's needs to move nearer to being able to walk on his own. What better gift can you give to another human being... a gorgeous little smiling happy boy might be able to get closer to walking because of us!
So.. instead of having a take away this Friday, eat what's in the cupboard, and donate as much as you can afford to help Reggie!
All of the Choose Leads team (Jade, Trevor, Charlie, Thomas) and Reggie's Uncle Steve will be doing a Sky Dive (OMG!!) on the 9th of August to raise this money. Choose Leads will be paying for all of the Sky Dives so every single penny you give will go towards this treatment!
All together we need £3500 for the treatment and expenses to get Reggie into this amazing 3 week program! Any money after this will be donated to the PWS Research Charity so we can all help other children just like Reggie!