Shave or Dye in Aid of Baby Aidan.

Hi All! Members of the Pilgrims Food Masters, Shillelagh Team will be taking part in a Shave or Dye Fundraiser to help Aidan's family with the ongoing expenses relating to his care. Aidan's Daddy Nigel works as part of our team onsite.

Aidan's Mammy and Daddy have been kind enough to share Aidan's story so far to give a brief understanding of what Aidan and his family are going through on a daily basis and of what is to come.

Aidan is our very happy bubbly two year old son who has four wonderful older siblings who just simply idolise him.

From birth Aidan has suffered chronic gut dysmotility that saw him spend his 1st year of life very sick in Crumlin Childrens hospital where he suffered daily from excruciating pain and vomiting.

At 8mths old Aidan was suffering from malnutrition, failure to thrive and complete intolerance to any feeds in his gastrointestinal tract. We watched as he slowly gained milestones like smiling at us for the 1st time at 4 months old and learning to sit up and crawl to very quickly watching him fade in front of us and watching the light in his eyes become further away with each milestone that regressed from his tiny body. This is when after many many tests and failed attempts of feeding him that doctors sat us down and told us our sweet little boy was in intestinal failure. They told us that in order for Aidan to survive he would need to stay on TPN ( total Parenteral nutrition). This in short is Intravenous Nutrition that is delivered through a central vein line directly to his heart via his blood stream. Unfortunately TPN brings its own secondary challenges to Aidans health and care routine.

This was a very difficult time for us where we went into flight mode and all we wanted was to take our baby home. Drs at this point were unsure as to what was causing Aidans intestinal failure but they stayed positive and being honest gave us hope and reason to believe that this maybe something that will repair itself over time and things could possibly improve. However each week and month that passed and no sign of improvement became heavier and heavier on our hearts. At this point we really just wanted answers and to know what life was going to look like for our little warrior.

Just before we took Aidan home from crumlin in August of 2021 Great Ormand Street Childrens Hospital in a London agreed to look at Aidans case and to carry out further diagnostic investigations.

We traveled to GOSH in sept 2022 where Aidan spent two weeks and underwent some very intense testing.

On October 12th 2022 we dot his diagnosis.

Aidan has a condition called chronic neuropathic Intestinal Pseudo obstruction. This is where Aidan’s intestinal Nerves are malfunctioning causing major disruption in his gastrointestinal system. Aidan has the most severe form of CIPO which unfortunately is the cause of his intestinal failure.

There is no cure. Aidan will continue to depend on TPN and medications to keep him comfortable so that he is giving the best possible quality of life. He will however have two major upcoming surgeries. In the hope of preventing further damage to his intestines. We are so thankful that TPN is an option for Aidan, this truly is a form of life support for him. It has saved him from where he was just over a year ago. Our aim and hope is to keep his other organs healthy for as long as we possibly can but if and when the time comes that his liver/kidneys become affected he will then need a small bowel transplant.

Aidan will continually be attending appointments and admissions in both GOSH & Crumlin throughout the remainder of his childhood before moving onto adult services at 17 years old. With this comes huge financial pressure between travelling and general expenses when inpatient. Admissions to GOSH are challenging due to the excruciating cost of travel and accommodation. While we are extremely grateful that the bulk of Aidans medical supplies are covered on his medical cover, we still have ongoing monthly expenditure on medical supplies that unfortunately aren’t covered. With Aidan having a Central line means each time he spikes a fever he instantly has at least a 48hr admission to crumlin, he has multiple admissions for common colds as he struggles to fight them without the aid of respiratory support. Aidan will need medical equipment over the next year that unfortunately again isn’t provided . Main one being a hospital grade bed that he requires mainly to meet his medical needs but also for comfort as he gets bigger. ( hse will provide a bed but unfortunately not one that is height adjustable) which is highly required for administering his treatment and tending to his dressing care etc.

Aidans care is full on. He requires both parents present to attend his medical treatment and TPN administrations. thankfully we have been so blessed and lucky with Nigel being able to work full time from home. This has being a major help and lifeline to our family. And giving us the security of being affectively able attend to Aidans every need because with all the added cost of having a chronically Ill child, life still goes on and all your normal every day/month house hold bills don’t just disappear.

Right now Aidan is living life oblivious to illness. He suffers most days with chronic pain, vomiting and severe abdominal distension to mention a few but he bounces and is just so determined to live his best life. His biggest interests are just like any other little two yr olds. He loves playing with his toy trucks , climbing, music, animals And for us as his parents we will continue to do all we can to keep it like that for as long as we possibly can for him.