Baby Kody

Hi my name is Jackie and I am Kody’s Nana. I am setting up this fundraiser on behalf of my daughter Lea and her partner Conor. Kody is currently under the excellent care of Crumlin Children’s Hospital and has been there since just after his birth. Kody’s medical condition is so rare that Lea, Connor and Kody’s doctors are very much in the unknown and are uncertain as to what will happen in the coming months.

Lea and Conor welcomed their beautiful baby boy Kody on the 27th March this year. Kody was born 5 weeks early and we all fell in love with him instantly. Kody has been diagnosed with an extremely rare genetic condition called Megacystis Microcolon Intestinal Hypoperistalsis Syndrome (MMIHS). 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 (TPN) dependent Total Parenteral Nutrition and is hooked up 24 hours each day. This is the only way of getting nutrients and minerals into his little body. 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 7.5ml of milk every few hours. There is a long road ahead but this small step has given us massive hope. Kody has also had a vesicostomy to help him pee and release the pressure from his kidneys. Through all of this Kody has been a superhero and he is really fighting to get strong.

These past few months have caused tremendous stress, anxiety and fear for Lea and Conor as they try to figure out their new path. 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.

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.

Our 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!

On behalf of Kody, Lea and Conor 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. 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. Thank you