Lucas James White, from Hornchurch, was born on 13th August 2012, a healthy 7lbs 8oz. He was their first-born child and the first grandchild for both families.
Throughout the first two years of his life Lucas had been a slow walker. His parents noticed that he ‘rolled inwards’ on his heels and thought there might be something wrong, so they sought medical advice. In all other developmental areas he excelled so his parents 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, they 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 again his parents sought medical opinion. In April they were referred to Great Ormond Street Hospital where, after a series of tests orchestrated by their neuromuscular team, their fears were confirmed.
On 8th July 2016 the family was told Lucas had Duchenne Muscular Dystrophy and their 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.
Katy White says:
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.
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Also please check out their just giving page