Hari family joy as vital equipment already ordered

THE FAMILY of a boy living with a rare genetic muscular condition say they are “overjoyed” after learning the medical equipment needed to help prolong their son’s life has already been ordered.

Hari John Cain Jones, pictured, just 19 weeks old, suffers from myotubular myopathy, a rare illness affecting the muscles that control breathing and swallowing.

Hari’s complex care needs mean parents Michael and Ellen Jones, from Llanrug near Caernarfon, regularly travel to Alder Hey Children’s Hospital in Liverpool where he remains in a High Dependency Unit (HDU).

His parents feared they would not get funding for the equipment they need to bring Hari home, which includes a ventilation machine, and even launched an appeal, but Betsi Cadwaladr University Health Board say it will be provided and has never been declined.

“When a child with complex medical needs is discharged from a special- ist children’s hospital to their local district general hospital, the clinicians from both hospitals will work together to develop a personalised package of care, “said a spokesperson for Betsi Cadwladr University Health Board.

“This will include any specialist equipment or support needed.

“Betsi Cadwaladr University Health Board can confirm that funding for these specialist packages have never been declined.”

Michael, who has given up his job to help care for Hari, said he was overjoyed at the news after previously raising concerns. He said: “We’ve been told by our neuromuscular care advisor that one machine is in order and we will be provided with the other piece of equipment next week in Alder Hey.

“He will still need to be discharged before he can go home and his room will have to be specially adapted, but this is one big step in the right direction.

“We are overjoyed and relieved at the news.”

Michael previously said there had been complications during Hari’s birth in February at Ysbyty Gwynedd, Bangor. Hari was transferred to Alder Hey, where he had a muscle biopsy to try and diagnose what was wrong.

Michael said Hari went into a cardiac arrest which saw his lungs collapse and he was put onto an oxygen machine.

He said: “Three weeks passed and he was becoming stronger and stronger each day and has an even bigger smile.

“We thought there’d be no more bad news. Unfortunately it wasn’t to be and our life was turned upside down when he was diagnosed with myotubular myopathy.”