Tell Us About Yourself
Born and bred in Dublin Ireland, I am 43 years old.
I grew up in Terenure village, went to Templeogue College and onto Trinity before I started work in Intel. In 2000 I moved to Munich to experience Europe and work as an IT Consultant.
I met and married Claire Williams in 2003 while we were living in London. We were based in Munich until 2007 and finally moved back to Dublin when my company was bought by HP.
Finn arrived in Nov 2008 and almost straight away we knew we had some issues ahead. He arrived 10 weeks early and was in intensive care for some weeks..
Tell Us About Finn
Diagnosed with Quadraplegic Cerebral Palsy (affecting all 4 limbs) he was categorised as severe and unlikely to be able to stand or control his limbs going forward. We were unsure if Finn was mentally impacted but MRI scans have since proved the damage is limited to the physical side only – this is an incredible blessing and Finn has developed into a fantastic kid.
In general, he is a happy child and we try to do as many everyday activities as possible. He has a wicked sense of humour and is just about mastering the “Knock Knock” jokes.
He swims independently supported by arm bands, and loves showing how he can hold his breath.
He attends St Pius X Boys National School and has a great bunch of friends in his class with 5 of his buddies living in our estate, which leads to noisy boys night in watching the X-factor.
What is Finn’s Fund For Walking?
Finn’s Fund is about us not accepting the boundaries that the Irish medical advisors have given us. To be honest the level of care and attention available to us in Ireland is limited compared to treatments further afield
Enable Ireland provide equipment to facilitate Finn’s condition, but do not have the resources to provide the intense physio he needs, and we are determined to provide for him.
We accept Finn has Cerebral Palsy and will not lead a “Normal” life but our logic is the following. If through constant physio, swimming, horse riding, and since his birth, attempting new treatments in Eastern Europe, UK, Canada and North America and ultimately the SDR surgery, we can increase Finn’s potential ability.
If he starts to use his right hand to support his fine motor skills or the ability to stand aided, even for only parts of the day, then we have opened new worlds to him that are currently out of reach.
How Can People Help?
Even Knowing Helps
Even knowing about Finn’s story is positive, and helps. One of the amazing revelations to me was how his class mates have embraced Finn and are protective of him already, as well as compensating for his inabilities.
We have been accepted for the SDR operation (Selective Dorsal Rhizotomy) in St. Louis, Missouri in December which is an amazing operation that will get rid of Finn’s high tone and spasticity.
On a very high level, the surgeon opens Finn’s spine and tests each individual nerve within it. Though testing, they can define which nerves have been damaged from birth and which are healthy, and then cauterise the faulty ones.
This leaves Finn very weak and floppy but his body is no longer fighting against him. This and possible calf and hamstring lengthening surgery in the U.S. will make sitting, standing and walking all within Finn’s reach, and once he sees what is possible, I know he will personally be motivated and capable of breaking more barriers down.
The following 3 – 4 years after his operation are going to be so crucial to Finn’s development, and we are going to be pushing him to the limit, with lots of intensive physio and a daily 2-3 hour home training programme.
Advice
If any parents have been through this SDR surgery then we’d be glad to hear from them.
Donations
Total cost of the operations and treatments is about $80,000.
None of this is covered by the Irish Health system and the family are covering all costs personally, combined with donations
We have a concert being organised by the UBand in the Grand Social, on Nov 26th, and readers can attend or contribute as suits.
Find details on this operation, and more, on the Go Fund Me website Finn’s Fund for Walking, and let’s help Finn to walk.
Over to you now! Can you share this story on your social media to help Michael spread the word?