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Odhrán is 3 years old and has the genetic condition Neurofibromatosis type 1 (NF1).
This can affect many systems of the body and causes tumours to grow where they shouldn’t. These tumours can develop anywhere in the nervous system, including the brain, spinal cord and nerves. Despite affecting one in 3000 births, most people have never heard of it.

Odhrán was a spontaneous mutation meaning it wasn’t passed on from Colette or Richard. They hadn’t heard of it before. Colette noticed several light coffee coloured birthmarks appearing all over Odhran’s body when he was a couple of months old, and , when she consulted Dr. Google she came across it (you should never consult Dr Google!). Colette mentioned the marks, known as Cafe au lait spots, to a doctor at a routine check up and she arranged a referral to a dermatologist who clinically diagnosed him with NF1. We were reassured he was probably a mild case as he was meeting all his milestones. He attended regular check-ups with various consultants and and all was well, there was no obvious cause for concern.

Fast forward to late March 2020 and the country went into lockdown. Odhrán was 2 and a half and we thought it would be the perfect time to attempt potty training. In early April, over the course of a weekend, Odhrán became very lethargic, sleeping more often and lying his head down at every possible opportunity when he was awake. He was also struggling to have a bowel movement. Richard took him to the Doctor on the Monday and was advised it was constipation brought on by the training. Mother’s instinct knew best, this wasn’t just constipation, so on the Tuesday Colette and Richard decided he needed to be seen at hospital. On reflection he hadn’t been himself at all for a couple of weeks; his behaviour had changed and he was having tantrums which were completely out of character, however at the time it was put it down to a change of routine with lockdown plus the addition of his new baby sister.

Only one parent was allowed into A&E so Richard took him while Colette stayed home with his sisters, supported by her Mum and Dad, anxiously waiting by the phone. The doctors initially thought Odhran had a virus and ran a COVID test as symptoms of this were often presenting differently in children. We all prayed it was coronavirus but deep down suspected the worst. When an ophthalmologist checked his eyes on the Wednesday he could see some swelling of the optic nerve which was a concern so an MRI was arranged for the following day. Only twenty minutes after Odhrán went into the scan, a doctor came and took Richard into a side room. It was the worst possible news, Odhrán had a brain tumour.

For any parent to hear that news is just
devastating, but to be on your own at that point and then have to pick up the phone to break the news is just unthinkable. The call will haunt Colette forever and she has no idea how Richard managed it. Colette  and Richard both went into survival mode and the next they  knew they were walking by his bed as he was wheeled to theatre. 

The wonderful paediatric neurosurgeon had come to speak to Richard before Odhran was even out of the scanner. The tumour was so large it was causing obstructive hydrocephalus meaning it was preventing the fluid draining from Odhrán’s brain and his brain was therefore under dangerously high pressure. The surgeon said he was lucky to be conscious. Emergency surgery was carried out straight away to insert a drain to remove the excess fluid and relieve the pressure.

Odhrán underwent a lengthy eight hour surgery over a week later to debulk the tumour. The incredible surgeons were able to remove 88% of his tumour, which was a great outcome given the position of the tumour and the associated terrifying risks. One of the risks was a 33% chance that he would come out of the surgery completely blind. Colette and Richard can’t begin to describe the relief when they walked into PICU, in full PPE, and Odhrán said mummy straight away! He was playing with the nurse’s light and could tell Colette and Richard the colours of the balloons on the wall. His surgeon was amazed- his exact words can’t be repeated but I’m sure you can hazard a guess at the words he used to express his sheer relief!

Odhrán spent four days in PICU after his surgery and had a couple of bumps in the road during his recovery - just to keep everyone on their toes! When he was finally moved to the ward he then had the task of building up his strength to sit unaided and eventually he was able to learn to walk again. He was discharged just over two weeks later. Reuniting him with his sisters after a month away from home was just the best - a moment they’ll never forget!

His pathology results came back as low grade. Sometimes with Odhrán’s type of tumour they would take a “watch and wait” approach, however Odhrán was writing his own rule book, his tumour wasn’t behaving quite as others might so he would require further treatment, a belts and braces approach. Odhrán started his chemotherapy two weeks later. His protocol is once weekly treatment for fifty two weeks. He has been incredible throughout this journey and has tolerated his chemotherapy remarkably well. He really is a little warrior and all the staff in daycare just love him - he is quite a charmer!

We are now in the final weeks of his chemotherapy and the great news is that his tumour has responded to treatment and it now stable. The tumour will always be there but for now it is “switched off” and not growing which is exactly what the consultants hoped for. The medical team will keep a close eye on it with regular MRIs going forward.

It has been a rollercoaster of a year made especially more challenging with lockdown in the mix and not having the support of family and friends physically around them. Colette and Richard know everyone has been with them every step of the way and Odhrán has grown quite a big fan base!
We are so thankful that we’ve had such a positive outcome for Odhrán so far. This is all down to the wonderful staff of the Royal Hospital for Children. We will be eternally grateful for their skills, expertise and care. That is why we have chosen to fundraise once more for the Glasgow Children’s Hospital Charity.

As Odhrán embarks on his final 10 weeks of treatment, we plan walk 10 miles every week and hope that you can donate to our cause and hopefully some of you will join in our efforts too— the more the merrier! Whatever you can/would like to do to help towards our funds for the GCHC will be so appreciated!

Thank you!