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Cerebral Palsy Warrior: Oisín’s story

April 02, 2024

Oisín was born at King’s College Hospital in London in May 2018, prematurely, at just 25 weeks. His premature delivery came after his mum developed sepsis and was rushed in for an emergency C-section.  

Oisín was diagnosed with quadriplegic cerebral palsy, among other conditions, and required long-term hospital treatment. Meanwhile, his family was given a room at the nearby Ronald McDonald House Camberwell, where they could be just a short walk away from their baby, in a safe, warm, and comfortable environment, completely free-of-charge.

In October 2020, the family returned to the House to say ‘hello’ and to present a cheque to the Charity, in appreciation of all the help they received during their stay. It also enabled them to sponsor a room in Oisín’s name.

Guest blogger: mum, Seanin

The day Oisín was born, was a day we both came very close to losing our lives. During the next seven months, we faced some major difficulties, as we watched our little hero battle and show strength which I have never seen in any human being. He was truly inspiring; his tiny body had multiple blood transfusions and more than 31 surgical procedures. Of the 192 days Oisín was in the Neonatal Intensive Care Unit (NICU) at King’s, he was ventilated for more than 80 of those days, with another 35 days on nasal intermittent positive pressure ventilation (NIPPV) and continuous positive airway pressure (CPAP), then the rest on high flow and low flow oxygen. When Oisín was finally discharged, he had to have 24-hours-a-day oxygen support, which has slowly decreased over time.

This Charity was a godsend to our family, enabling us to stay just five minutes from the hospital. When I first went to the House, I was in a daze. I’m normally very friendly and chatty but I just didn’t want to communicate with anyone. The first few weeks were also quite blurry, spending only three to four hours a day in our room to sleep. However, the staff were just brilliant; very friendly, and supportive, and we will always remember them. During our second week at the House, we returned after a long day on the ward to a lovely ‘Happy Birthday’ sign on our door and a present for me; it was so thoughtful!

Unfortunately, we do not have any family in the UK, but our Irish families travelled over on an almost weekly basis to stay a night or two with us and they were made to feel so welcome in the House. My daddy even got involved in cooking for the Father’s Day breakfast that the House organised. We got to know lots of different families while in the House, and we found it incredibly supportive as we were all going through similar situations. We stayed almost six months, and we would have been lost without the House; it was a ‘home away from home’.

Oisín has quadriplegic cerebral palsy among other conditions, which means he has difficulties with muscle control, balance, and coordination, so simple things such as sitting without support can be extremely difficult for him. But Oisín is incredibly determined and tries so hard to learn all the things his muscles need to do. When he was two, he was still unable to sit, but due to loads of therapy, family support and his natural tenacity, he can do this quite independently now. The next challenge was trying to get him to take more food orally, so we could get rid of his feeding tube, but it had been in place for so long that it took a while for us to retrain his brain into realising, he needs to work for his food. Oisín now attends the Buddy Bear Trust Conductive Education School in Dungannon in Northern Ireland, a school committed to providing an individually tailored education programme for children with cerebral palsy. He is doing really well there and loves it.

Although Oisín uses a wheelchair, our family members have travelled the world to find the best available therapy for him and most recently, Oisín had the opportunity to use a Trexo Robot-assisted gait trainer, which uses groundbreaking robotic aided leg supports for the child to experience a perfect gait pattern. Being able to fine tune your child’s gait pattern, and stretch out their muscles is so important, and could hopefully prevent the need for further surgery for Oisín. There were noticeable differences in Oisín’s initiation of steps; he took hundreds of steps in each session and gained lots of confidence. This would not be possible with typical gait trainers and walkers. To say he loved it would be an understatement; he revelled in it, especially being able to walk independently with his little sister, Naoise. We know Oisín has vast potential, and we are now crowdfunding to enable him to have access to this dynamic and ground-breaking technology.  But above and beyond everything, Oisín remains the happiest little lad you will ever meet, so full of smiles and he really is doing great, considering everything.

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