THE CONCERNED mother of a little boy with spina bifida has spoken out about how delays with specialist equipment left her son's surgery "null and void."
Emma Horan's son Thomas, who turns three in May, has also been waiting for a new wheelchair since November 2016.
"That was when we first applied for the chair," the Montenotte woman explained.
"We are due to receive it on April 6. A family very generously gave us their old chair but it was too large for Thomas so he was on the floor 90% of the time."
While the 17-month delay for a wheelchair has posed significant issues for Thomas, it was the delay with a specialist ankle correction device that has presented him with further difficulties.
He was due to receive an ankle-foot orthosis (AFO), a device to maintain the correct positioning of the foot and lower leg after surgery in July 2016.
"[His AFO] didn't arrive until December of that year," his mum said.
"By then, his foot had reverted back to the way it was. This basically made the surgery null and void."
The delays meant that Thomas had to face his operation all over again.
"My immediate reaction was one of complete disbelief," Emma said.
"We had been so excited about what the surgery would do for Thomas only to find out it had all been for nothing."
The operation was redone in September 2017.
Emma said, "Thomas will never be able to change the fact that he has spina bifida, but this was something preventable. Putting Thomas through these things wasn't as difficult when he was a baby. Now that he is older he is that bit more aware of what's going on."
She explained that it's not just her family who are suffering.
"You only need to look at the kids this is affecting to realise the system is broken. The reality is these children are on the floor because they have nowhere else to go. This might be a shock for people to see but there is no other way of dealing with the situation."
Thomas experienced a number of setbacks while waiting for his ankle-foot orthosis.
Emma said, "Thomas can't feel anything from the knees down. This means that if his foot gets caught in something he won't be able to feel it and will just keep moving. The foot becomes twisted as a result. We have been in accident and emergency twice because of these sort of incidents."
Emma referenced the misconceptions that often surround disability.
"People have asked why I don't just fundraise for these things, but unfortunately it's not that simple. If I was to get an orthotic and a wheelchair custom built privately it would mean I'd lack the support and maintenance that comes with being tied in with the HSE. If anything happened, I would be in an even worse position."
The mother-of-three hopes that the setbacks her brave son has faced won't leave a lasting legacy.
She said, "Thomas shouldn't walk but he surprises us every single day. Who knows what he will achieve in the future."
The HSE did not respond to a request for comment from the Evening Echo.