Adam gets his mobility, but the struggle for support goes on

Bureaucracy surrounding the allocation of paediatric resources has added to family stress, writes Health Correspondent Catherine Shanahan.

Adam King is out and about in the summer sunshine, as is the right of every child, because he’s finally got the set of wheels he needed.

That vital set of wheels — which took the best part of a year to access — have put an end to Adam’s days of “scrambling about on all-fours in the dirt, like an animal on the ground” — which is how he got about, for the most part, before his chair arrived.

Adam’s mobility is limited by his condition, Osteognesis Imperfecta (OI), a brittle bone condition that leaves him highly prone to fractures, and extremely short of stature.

Adam, of Ballymakeagh Beg, Killeagh, Co Cork, joined the Enable Ireland wheelchair waiting list in July 2017 and was approved by the HSE for his chair on April 10, after his parents, Fiona and David, highlighted his plight in this newspaper.

Their anxiety centred on a fear that their son would not have the wheelchair in time to acclimatise before starting preschool at the end of August.

It took another seven weeks before he got to make his maiden voyage, on June 1.

“He’s flying now,” Fiona says, “even from the perspective of sitting up. I never saw him sitting up so straight.

“He’s been out on the prom and on the boardwalk in Youghal, and around the town, delighted with himself. And he’s already making a good attempt to propel the chair, and to turn and reverse.”

A thumbs-up from Adam, sitting proudly in his new wheelchair yesterday. Picture: Denis Minihane.

Unfortunately for Adam, two accidents led to fractures and casts before the wheelchair arrived. He fractured his left femur last year at the end of March, and had a rod fitted for 14 months.

It was removed on May 3, but in less than a fortnight, he was back in a cast after he toppled while playing with a toy garage, leading to a broken right femur and a cast from ankle to rib cage on both legs — essential to maintain good alignment of his hips and to limit his movement for healing purposes.

“He had two surgeries in the space of 12 days, which was quite demanding on his little body.”

Adam and his family have done extraordinarily well to limit his fractures to two in the three years and seven months since his birth, as other children with his condition have suffered multiple fractures over the same timeframe.

“He leads a very active life. We modify many things to suit him, but he participates in pretty much everything his three siblings are doing,” Fiona says.

Adam King makes use of his new wheelchair with his mother Fiona at their home in Killeagh, Co Cork, this week. Picture: Denis Minihane

The Kings attribute much of this success to their decision, following his in utero diagnosis, to travel to Sweden for an experimental treatment, whereby at 28 weeks’ gestation, stem cells were infused via the umbilical cord in an effort to promote healthy bone growth.

They have fought for Adam from the moment he was diagnosed at 24 weeks and Fiona says the battle will be lifelong.

“The situation at the moment is that we have another application in with the HSE for a walking frame,” Fiona says.

That application was made on September 19 last year.

While Adam does have a walking frame supplied from the store room at Enable Ireland, it is not tailored to meet his needs and he can only walk in a straight line when using it, as it is too heavy to manoeuvre.

“At the moment, he’s very far down that HSE list and the way it’s going, it could be another year,” Fiona says.

Adam needs a lightweight frame so that he can continue to improve his walking ability, which is vital to build muscle tone, and in turn helps his bone density.

Moreover, it’s important for his holistic development, Fiona says.

“He has reached his developmental limit with the existing walking frame,” she says.

Adam will also require orthotics — specialised footwear and leg supports — once his cast is removed, and there’s another waiting list for that.

Adam King getting around on his hands and knees at his home in Killeagh last February. Picture: Eddie O’Hare

All applications go through the HSE’s Resource Allocation Groups (RAG), who meet fortnightly or monthly, to consider requests, indexed in order of clinical need.

On these lists, children in the Cork/Kerry region compete with adults for resources, and applications come from a variety of sources such as community healthcare organisations, acute hospitals, and voluntary service providers. The numbers are large and the budget is finite. In other HSE jurisdictions, paediatric resource allocation lists are separate from adult lists.

“It seems to be so complicated. There are layers and layers of bureaucracy to navigate before a child can get a vital piece of equipment,” Fiona says.

“Yet this equipment is essential for them to lead a full and dignified life, which is a basic human right.

“The way the system is currently structured adds significantly to the struggles of parents who are already dealing with fairly stressful situations.”

“It’s going to be a long crusade. At the moment though, we are delighted to see the joy and independence that Adam’s wheelchair has brought to his life.”