Help us with this lifeline
5:30am Thursday 10th July 2014 in By Marion Sauvebois
THREE years ago marked a point of no return for Bryn Hitchcock as the little boy was diagnosed with Late Infantile Batten Disease, a degenerative condition, which gradually robbed him of his ability to walk, talk or feed himself.
As debilitating as it has proved, his illness could have taken an even greater toll on the seven-year-old and his family without unfailing support from Oxford’s Helen House, the only hospice caring for children with life-limiting illnesses in the Swindon area.
Bryn’s mother Rhianon, of Wroughton, has now rallied behind the charity’s appeal to secure £500,000 and is urging parents like her and philanthropists to donate generously and allow staff to bring 30-year-old facilities up to modern standards.
“Helen House is such a wonderful place,” said the mother-of-three. “Staying in a flat there when they look after Bryn gives us peace of mind. It’s nice to be able to leave him in the care of people at Helen House and know that he can relax.
”However, it is now over 30 years old so it does need updating with improvements including piped oxygen in all the rooms and wider corridors and spaces so larger, modern wheelchairs and beds can be moved around. The spa, music, art and play areas are places we spend time together and they, along with the kitchen and dining areas, do need updating. The refurbishment will also provide a dedicated teaching space for children so they are able to continue their lessons during their stay.”
Batten Disease is a fatal, inherited disorder of the nervous system. It affects between five and six children each year in the UK.
Bryn was two-and-a-half when the first signs that something was wrong appeared. While he could solve a jigsaw puzzle one day, the next he would be incapable of putting it together again. When he began experiencing epileptic fits, his parents Rhianon and Tom’s fears were confirmed.
“He was fine when he was born,” she added. “Later, his speech was a bit slow but he was fine. But at two-and-a-half his development started to go backwards.
“Then his epilepsy started. He was diagnosed when he was four. Before he was running around, speaking, eating but now he can’t. He is tube-fed and he can hear but he has lost his sight. He can be in pain, or sick at night so we keep him in our room to check he is OK. He is still a happy little lad and still smiles and gets on with it. Some children with his condition live up to 11.
“But each case is different. We try to carry on as a normal family.”
Helen & Douglas House, split between a children and young adult hospice, has received £436,000 from NHS England towards the refurbishment and raised £500,000 since the end of 2013 though donations. It needs a further £500,000 to complete this essential work.
- To make a donation visit www.helenanddouglas.org.uk, email the fundraising team at firstname.lastname@example.org, or call 01865 799150.