Henry Roberts

WPH CHARITABLE TRUST HELPS BUY NEW WHEELCHAIR FOR HENRY

The parents of a young boy with spinal muscular atrophy (SMA) have been awarded £3,072 from the WPH Charitable Trust.

Richard and Stephanie Roberts, who live near Lapworth, south Warwickshire, have used the money to purchase a Panthera Micro Wheelchair for their only child Henry, for use inside and outside the home.

Born in August 2015, Richard said that during Stephanie’s pregnancy and the first few months of Henry’s life everything at first appeared normal.

But it was when Henry was about four months of age, during sensory classes, Stephanie noticed he seemed a little slower in his development than other babies of the same age. She had a gut instinct that something was not right.

Eventually, when Henry was 10 months old, he was diagnosed with SMA.

Up until then, as both Richard and Stephanie had both also been the only children in their families, neither they nor their parents had been aware that both carried a faulty gene.

Richard said: “For Stephanie and I to both carry the defective gene and then to actually meet and have a child, the odds were 100,000–1.

“Unfortunately with both of us carrying the gene we are facing the reality that Henry is never going to be able to walk. It is a degenerative condition which means that he will lose strength and what limited posture control he has.”

After diagnosis the couple moved house to give Henry a home which was on one level and without steps, making it easily accessible for his wheelchair.

Richard said: “Henry’s new wheelchair is manual but he finds it easy to navigate and it gives him the independence to go where he wants to go.

“It has some bespoke padding to support the alignment of Henry’s hips and knees. This is important as without supportive seating Henry is like a rag doll.

“The new wheelchair has been absolutely phenomenal. It has almost helped reinvent Henry and given him so much more independence – especially in and around his school environment.”

Richard added: “The WPH Charitable Trust has been so supportive. Without the grant we would not have been able to provide this wheelchair for Henry and since he’s had it, it has opened up this whole new world. He is able to interact and play with other children and he’s able to explore under his own steam.

It’s wonderful to see. In what has been a very dark period, seeing Henry in his chair has been like a beacon of light. We can’t thank the Trust enough.”