Darragh family aims to keep Taylor smiling

A CHILD’S smile can brighten even the darkest of days. And for the parents of 14-month-old Taylor Mulqueen Howard, her beaming grin means far more than any words could ever express. Little Taylor from Darragh was born with an incurable condition so rare that she is the only baby in the country to suffer from it and one of only three children in Ireland. Looking at Taylor happily sleeping in her buggy, there is little to suggest that she is ill, apart from a feeding tube. However, she may never walk or talk and her family have to cope with the fact that children with this condition do not live into their teens.
Despite this, Taylor’s parents are determined to make the most of every precious day of their child’s life. They have begun a fundraising campaign to raise €10,000 to build a special sensory room for Taylor, which would help give her some of the joy of childhood.
Taylor was born with the genetic conditions Nonketotic Hyperglycinemia (NKH) along with Absent Corpus Collosum (ACC). Her mother Róisín Mulqueen explains, “She was having a lot of seizures and when she was eight weeks old, she was diagnosed with ACC, which means that the nerve in the centre of the brain that sends signals to the left and right side is missing. Then she was diagnosed with NKH after tests in Temple Street Hospital, her liver can’t break down the proteins in her body which causes the glycines to rise to toxic levels. We’d never heard of these conditions before it is so rare, it was a lot to take in.”
The tot now regularly attends the Mid-Western Regional Hospital Limerick along with Temple Street Children’s Hospital in Dublin. She also attends physiotherapy and needs to take six types of medication twice a day. Eight weeks ago, Taylor lost the ability to feed and she now has to be fed through a tube in her nose. Her father, John Howard, told The Clare Champion, “When she hasn’t got the tube in, she looks just like any normal 14-month-old. Before she got it in, people would be saying are you sure she has this condition because she looked fine.”
In November, she is due to attend surgery to have a PEG tube inserted in her stomach to aid her feeding. “Her muscle tone has weakened, she can’t sit up like other 14-month-olds, she can’t reach out and grab toys or anything. She may never walk or talk,” Róisín explained.
At just six months old, Taylor lost the ability to smile but thankfully, with increased medication, she has now regained that joyous expression. John said, “No matter how much of a bad day you are having yourself, just a smile from Taylor would brighten it. She gives the most beautiful smiles.”
While the family are strong for Taylor, the parents admit they have struggled to come to terms with their daughter’s condition and what it holds for the future.
“The doctors keep specifying to us that children with this don’t live to their teens. You’re told to prepare yourself but you can never prepare yourself. It’s very hard to deal with, it’s very emotional but you have to carry on as normally as you can, especially for the other kids. But we do often have our own little cry about it. Some days, we look at her and we think to ourselves, ‘this isn’t happening to us’. It’s only recently that I came to terms with it, I was not dealing with it at all,” Róisín candidly said.
The parents added they have received massive support from family, friends and from the Jack and Jill Foundation. “We have a nurse, Mags Naughton, who comes and she is absolutely brilliant. She has never had to deal with a child with NKH before but she never comes to us with doom and gloom, speaking about the what ifs. She will leave you thinking positively. Even though we know what the outcome is going to be, it’s nice to have a bit of positivity.”
Taylor’s parents have been told that her condition is beginning to deteriorate but they are striving to raise funds for a sensory room, which would give Taylor valuable neurological stimulation.
“The doctors have told us there is nothing more they can do for her. There is no cure for this illness. All we can do for her from now on is make her as comfortable as possible and to cherish every day we have with her that is good and every day that is bad we just have to try and comfort her,” said Róisín.
According to Róisín, the sensory room will go a long way towards helping Taylor. The room would be specially designed to include coloured lights which Taylor can actively play with.
“The one thing that really motivates her is lights. She could be sitting there all day with lots of toys and they won’t do anything for her but if you turn on the sitting room light, she gets into convulsions laughing. And throwing coal into the fire, she loves loud noises and thinks it’s hilarious,” Róisín said.
“The sensory room would make a huge difference to her. They have one in Temple Street and they brought her down into it and she was absolutely fascinated. We decided to try and get one for her, anything to make her life easier and to give her some enjoyment.”
A fundraiser for the sensory room will be held on November 12 in the Magpie Bar in Clarecastle. Meanwhile, a special bank account has been set up for the Taylor Mulqueen Howard Fund at Bank of Ireland, Ennis, account number 64383776, sort code 904210.