Jason’s Journey
Donation protected
Hi everyone! We would really appreciate it if you could take a minute or two to read a little chapter of Jason’s journey over the last 5 months. Thank you - Jason’s Family, Dixon/ Heneghan.
A little bit about Jason and his journey. Jason is a 13-year-old funny, intelligent, and brave boy who enjoys playing on his PlayStation, he is a die-hard Man City fan, he loves horse racing especially when he has big wins, and adores his dog, Hannah. He is the most caring and kind person you will come across. Jason has been going through an ongoing battle since he was born but especially over the last couple of months. Jason has been a patient in Our Lady’s Children Hospital Crumlin for over 12 years but he has been staying in hospital there the last 5 months.
Jason has a background of congenital myopathy with a MEGF10 mutation with scoliosis. As a result of his severe congenital scoliosis, Jason has restrictive lung disease requiring him to use a BIPAP. Jason was admitted to the hospital 5 months ago which started out as a collapsed lung. After a closer look, we were given the devastating news that no parents, siblings or family wants to hear. His collapsed lung was much worse than we had thought and his lungs were failing rapidly.
With little and no options, we stood by Jason and believed he could pull through. Jason had two drains inserted by the Cardiothoracic team on the 24th of September 2021. Jason deteriorated that same day resulting in him being quickly ventilated along with this his chest drain was causing a tension pneumothorax at the time. A repeat X-ray showed that despite two chest drains a large persisting pneumothorax was still evident meaning his lung was still collapsed. On the 28th of September, a left-sided hemiparesis was noted. This showed that Jason suffered from a stroke resulting in him losing some movement in his left upper arm grip movements and lower left leg. Being informed by doctors that Jason's movement would not come back was devastating.
The next couple of weeks were the toughest on all of Jason’s family as it was a waiting game with multiple meetings giving us more and more devastating news, but seeing Jason fighting despite what doctors were saying gave us hope that he would pull through. An agreement was made to proceed with bedside pleurodesis which is a procedure to try and stick the lung to the chest wall. Unfortunately, the pneumothorax remained with chest drains continuously bubbling.
Although the bedside pleurodesis failed Jason kept fighting. We were then given the option of Jason undergoing surgery to try and inflate his lung by getting it to stick to the chest wall. This was a scary time for everyone as Jason would have to be put under general anesthesia and has troubles when it comes to incubation. On the 7th of October Jason had a right blebectomy with partial decortication and pleurodesis performed in the hope of his lung to expand and stick to the chest wall. It was our last and only option. Given a little or no chance of survival Jason defied the odds and pulled through the procedure. The next couple of days were very stressful for Jason’s family and for Jason himself. One chest drain was removed on the 18th of October as it was not bubbling for a period of time. Jason then developed pneumonia. As you could imagine this was a huge step backward, but again Jason defied all odds and overcame it. There was also some interval improvement meaning his lung looked a bit better in the chest X-ray but a right pleural effusion and lower right bubbles were still evident meaning he still had air between his lung and chest wall. By the 27th of October, the air leak had stopped with the lung being sealed finally this meant the air was out and the lung has stuck to the chest wall. Jasons' lung is currently expanded to the best of its ability which means he is dependent on his BIPAP to do most of the work.
On the 3rd of November, Jason was extubated meaning he was taken off his ventilator and given a chance to cope on his BIPAP. Again as you could imagine this was a very scary time for all of Jason’s family and for Jason too. Jason managed great with his BIPAP and has been doing great on it since then. He has full movement of his body meaning he fully recovered from his stroke. He is gradually improving via BIPAP but as a result of his severe scoliosis and his underlying muscle weakness in his lungs, he is dependent on a BIPAP night and day, but he has gradually increased his time off BIPAP for some time of the day by using SIP ventilation. Our plan for Jason is to get him stronger, healthier, gain weight, and get him home.
On the 7th of February 2022, Jason was transferred to his local hospital 'Castlebar General Hospital' under observation and will hopefully return home within the coming weeks. Unfortunately, Ireland cannot offer any more medical help, therefore, we want to research and secure second opinions on Jason's rare MEGF10 condition (scoliosis, low muscle tone, lung problems, etc) in the United Kingdom and the USA in the hope to find an alternative treatment. Along with that, we would like to prepare for when Jason will be at-home. Since Jason will need a lot of care his home environment will have to be adapted to suit his needs as of now he is wheelchair dependent. Services such as private physiotherapy will also be needed weekly along with other services. As Jason loves to get out and about he has already done out a list of places and things he wants to go to and do. One thing on that list is going to a Man City Premier League Final to be specific (his words, not ours as he's confident they'll get to a final) and he would also love to go to Punchestown Festival. Those are just two things from a very long list of things he has planned. As you can imagine Jason’s life along with his family has been put on hold for the last 5 months and he has many things planned to do with his friends and family when he gets home. Along with fundraising so Jason can do these things we would also love to get Jason’s story out there and heard of. We really would appreciate it if you could all share and spread Jason’s story. He is so strong, brave, and such a miracle who we all love so much. He is a character whose family loves him to bits. We are all so proud of everything you have overcome and you deserve the world and more Jason. We all love you so much xxx... - Jason’s Family, Dixon/ Heneghan.
Organizer and beneficiary
Jason’s Family
Organizer
County Mayo, Mayo
Caroline Heneghan
Beneficiary