Case Study – William

William was born in January 2011 with severe disabilities, eventually diagnosed as Myotubular Myopathy.  He breathes via a tracheotomy and is fed by a gastric peg. He requires regular monitoring of his breathing and physiotherapy to clear his chest and airway.  Following his birth William was in hospital for several months and was not expected to live.  MM prevents the development of the muscles which means that William was not expected to survive beyond infancy. 

His father is serving in the Royal Marines and did three tours of Afghanistan.  They have one other child who is eleven years older than William.  

The Children’s Fund began supporting him and his family at an early stage, firstly with travel and childcare whilst they were coping with his extended hospital stay and then, when he came home, with sensory aids and equipment.

When William was 18 months old the Children’s Fund purchased an iPad which really improved his situation – allowing him to develop his cognitive ability and fine motor skills.  This was fixed above his bed so that he could operate it himself. 

As time went on we have assisted with the purchase of specialist buggy, costs towards a people carrier car (in order to transport William and the equipment required to keep him breathing) and other equipment. William has defied all the odds and is now 7 years old and doing really well.  In 2016 the family approached us again.  The NHS had recommended a specialist power assisted wheelchair which costs £14,405 but were only able to provide funding for a small part of it (NHS £3,369).  The wheelchair enables William to control it, it has adjustable height so that he can reach to get things from a shelf or be a floor level to play with his friends. Together with the Royal Marines Charity (£1000) and the RNBT (£1000) we were able to fund this for the family (RNRMCF £9,036)

The family are incredibly grateful for our support as their son continues to defy all the odds on his survival.   Wherever possible they have fundraised for us – holding cycle rides which include William in his adapted buggy attached to a bicycle and other events.

 

 

 

“No words can describe how supportive the RN & RM Children’s Fund have been for my son William over the years. Becoming a Royal Marine is not just about earning the Green Beret, it is also about inheriting a family and being part of the Royal Marine family. This has meant that he has had the opportunity to lead a maximum quality of life despite his disability due to the help of this amazing charity. Their funding throughout his life of much needed equipment such as his power chair means William can explore freely and has much needed independence as well as meaning we can spend quality time together. This would not have been possible if it wasn’t for the fantastic support of the Royal Navy and Royal Marines Children’s Fund”
William’s Dad