Ennis family overwhelmed by the support of the local community as their baby is diagnosed with a rare condition
AT just three months old, Kody Meaney from Ennis, described by his parents as their “superbaby”, has already endured three surgeries after being diagnosed with an extremely rare genetic condition. Little Kody’s family were stunned when they were told that he had been born with a condition called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS).
The life-long condition with no cure affects the bladder and gastrointestinal system and Kody has been in the care of Crumlin Children’s Hospital since he was born five weeks premature on March 27. His family need to be with him at all times and mum Lea has been staying in Dublin while dad Conor has reduced his hours of work so he can be with them as much as possible. According to Lea they are at “a loss for words” at the support they have received since Kody was born which has allowed them to spend as much time as they can with their beloved son.
Speaking to The Clare Champion Lea’s mother, and Kody’s grandmother, Jackie Garland admits they are “terrified” at what the future holds, though they are holding on to hope that he will continue to beat the odds.
“He’s at the stage now where he is interacting, doing his first smiles. The thoughts of losing him is shocking, but from the very beginning I’ve always said where there is life there is hope. That’s what I’m hanging on to,” she said.
The dream is for Kody to eventually have the opportunity to come home to Ennis and his family. Specialised equipment will be needed for the home while Kody will require further operations and possibly organ transplants in the future.
An online fundraiser has been set up to support this along with helping with the rising costs of travelling to and staying in Dublin as it will be sometime before Lea and Conor will be able to return to full time work. Jackie describes the care that Kody has been receiving in Crumlin as “excellent, they are just dynamite”.
“Kody’s medical condition is so rare that Lea, Conor and Kody’s doctors are very much in the unknown and are uncertain what will happen in the coming months,” she explains.
“His condition is just so complex, one of the doctors told us they don’t see it in a career. If you look online at the research out there into this, it’s absolutely horrifying, it tells you the prognosis can be six to 12 months.
“My heart was inside my mouth when I saw that. But the doctors have been absolutely fantastic. They said that research is 20 years old and medicine isn’t black and white, it has come on in leaps and bounds since then and medicine has caught up so they are not giving a prognosis. We have to be hopeful, I can’t look at it any other way.”
Remembering with a smile when Kody was born she says, “we all fell in love with him instantly”.
When Lea and Conor were told of his diagnosis she recalls, “We had never heard of this condition and it came as a huge shock. Kody has the most severe form which has had a massive impact on the functioning of his stomach, intestines, kidneys and bladder. As the doctors have described it ‘his plumbing is not working’.”
Kody is Total Parenteral Nutrition (TPN) dependent and is hooked up 24 hours each day as it is the only way of getting nutrients and minerals into his little body. In his short life so far Kody has undergone three major surgeries.
“He has had an ileostomy placed which failed to function so it was revised a month later. Thankfully this has helped Kody and he can now have 9 ml of milk every few hours,” said Jackie.
Kody is Lea and Conor’s first baby, with Jackie describing her daughter as a “fantastic mammy who will do anything for him”.
The proud grandmother of four travels to Dublin every week so she can see her newest grandson telling us, “He knows his Nana when I go in the door,” she said. Before going on maternity leave, Lea had been working with Jackie in the Inagh Ark Creche and Jackie says the staff and others at the creche have been a fantastic support to them over this difficult time. She also praised Conor’s employer, Cummins Tarmacadam, for their understanding as there have been times that the new dad has had to suddenly dash off to Dublin, such as when they were recently told Kody had contracted MRSA.
“Things can happen really quickly with Kody so he needs to be there for them,” says Jackie.
Understandably, this has been a very difficult time for the couple, and Jackie decided to set up an online fundraiser campaign to help ease some of the financial pressures they are coming under currently. MMIHS is a lifelong condition and unfortunately there is no cure.
“Kody requires ongoing significant care which means Conor and Lea must be with him at all times. The financial burden that they face is immense as they struggle to keep up with daily living costs, bills and expenses both at home and in Dublin.
“As time progresses there is a big possibility that Kody may need organ transplants and this will mean travelling abroad to be with him.
“Life doesn’t stop because of illness and Conor tries to work three days a week to keep his family going. More often than not he has to leave work in Clare and return to Dublin as Kody’s illness is so unpredictable,” said Jackie.
“MMIHS is so rare that a care and treatment plan for Kody is being figured out. When Kody gets home he will require medical equipment and a sterile room in our home to ensure his TPN is administered in a safe environment. Kody has little to no immunity and if he gets an infection it could be detrimental for him.
“Kody will require further operations and hospital appointments in Dublin and beyond. This means that Lea and Conor will be unable to return to full time employment for the foreseeable future.”
Their wish for Kody is “that he gets the chance to come home to Clare to spend time with all of his family. His life will never be ‘normal’ but it will be perfect!”
The family have been overwhelmed with the donations they have already received to their online fundraiser.
“I would like to thank everyone that has supported them so far. Everyone’s warm wishes, prayers and candle lighting are working for Kody as he keeps on beating the odds,” said Jackie. “I am reaching out to anyone who can make a donation to help support my daughter and her beautiful family. Every donation is welcomed with huge gratitude.”
Speaking from Dublin Lea adds, “Conor and I are at a loss for words at the moment to be honest. We just want to thank everyone for their massive support donating to the go fund me, helping us stay together as a family through all the ups and downs here in the hospital. We are truly grateful for all of the support, messages and prayers. Kody at the moment is doing quite well. He is and always will be our superbaby.”
Donations towards the fundraiser for Kody and his family can be made at www.gofundme.com/f/2sfrh-baby-kody