For anybody visiting our page for the first time and perhaps don’t know us, here is a brief background on our family and our gorgeous little boy Lucas who, quite simply, is the best.
Lucas James White was born on 13th August 2012, a healthy 7lbs 8oz. He was our first-born child and the first grandchild for both families. We were absolutely over the moon and the following years brought us nothing but sheer joy. We live in Hornchurch, Essex (close to family) and were equally delighted when our daughter Sophia made her arrival into the world on 1st October 2014.
Lucas had been a slow walker and was nearly two before he mastered the art. We noticed that he ‘rolled inwards’ on his heels and thought there might be something wrong, so sought medical advice. In all other developmental areas he excelled so we had no fear of it being anything serious. Doctors, orthopaedic specialists, physiotherapists initially diagnosed possible hyper-mobile joints and gave him foot splints. A year later, with the problem worsening, we sought further opinion and the splints were discarded – the ‘foot issue’ would self-correct. It didn’t.
Easter 2016 at three and half years old, Lucas was not being monitored by anybody, school was looming later in the year and we were concerned. He was falling behind his peers with physical activities and couldn’t run, hop, jump, skip, climb, cycle…. and so on. He would often fall for no apparent reason, struggle to get up from the floor and had difficulty climbing stairs. Alarm bells started to ring and we again sought medical opinion. In April we were referred to Great Ormond Street Hospital where, after a series of tests orchestrated by their neuromuscular team, our fears were confirmed.
On 8th July 2016 we were told Lucas had Duchenne Muscular Dystrophy – our lives were about to change forever.
DMD is a genetic, muscle-wasting, life limiting disease that effects 1 in 3,600 boys and 1 in 50 million girls. It is caused by a small mutation in the dystrophin gene which results in muscles weakening instead of strengthening. General prognosis is full wheelchair use by age 10, continual muscle deterioration in the upper body, eventually affecting the heart and lungs, with the sufferer not normally seeing their 25th birthday. There is no cure, only hope.
We are blessed with having two beautiful, bright, polite, cheeky children, in Lucas and Sophia. We are proud to have amazing families and countless friends to see us through the rough times ahead. With your help, Lucas and the many other Duchenne sufferers will benefit through the world-wide efforts of charities like Action Duchenne to find a cure for this devastating disease.
You can also donate to Action Duchenne by texting LUCS79 & your amount to 70070. You can donate £1, £2, £3, £4, £5 or £10. No donation is too small.
Follow Lucas’ journey on our Facebook page:
Thank you for all your efforts and support. Our little boy will always know that he is loved by so many who care so very much.
Love Katy, David, Lucas and Sophia xxxx
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MuscleUp for Lucas
Helping to fund research into Duchenne M.D. for Action Duchenne because our gorgeous son Lucas has this terrible condition
We fund research into Duchenne MD to help everyone affected by the condition
Charity Registration No. 1101971