Nick's 3,000km challenge to help Kai get to NAPA

As most of you know, we attended the NAPA center in Boston in January (2022) for intensive therapy. It was absolutely incredible for his development and he went from just about standing to cruising along furniture in the space of three weeks

We have been extremely lucky to secure a place for Feb/March 2023 for another three week intensive session. These places are in high demand. It would be another amazing opportunity for Kai as he has been approved for 2 hours of neurosuit each day which helps with his body alignment, increased body awareness, helps with muscle tone and so much more. This would be super beneficial for Kai as he has right side hemiplegia (weakness) and does not use his right hand (he has movement but struggles to use it functionally) He will also be doing DMI for one hour each day which he did last year and we found this improved his balance and strength . This would total three hours of therapy each day for 3 weeks.

We 100% understand that this is a huge ask again but how can we not try our very best for our beautiful little boy.

Kai’s story:

When I was 32 weeks pregnant (with kai & his twin Finn) we found out the ventricles in his brain were enlarged (normal range is max 10 mm and Kai’s were up to 40mm). We were told that kai might not be able to walk, talk or do anything that Finn would be able to do. He was diagnosed with Hydrocephalus at birth and had a VP shunt fitted in his brain at 10 days old and will have that for life to help drain the fluid in his brain. At 6 months old kai was diagnosed with a rare type of epilepsy (infantile spasms), this was by far the most awful time of our lives, he was having multiple seizures/spasms a day.. I still can’t speak about it without getting upset. Thankfully kai is seizure free and we are hopeful he will never ever have a seizure again.

Kai was born in July 2019

First sat up in April 2021 at 21 months

First started to weight bare on his feet September 2021

Started to cruise along furniture during NAPA February 2022

Took his FIRST steps July 2022 just before his third birthday

Walked into preschool (with support) September 2022

We are super proud of our amazing little boy and to get him walking independently we feel another session of NAPA would be hugely beneficial. He is very unsteady on his feet due to his right side hemiplegia (weakness). Just to put it into context he has similar traits to Cerebral Palsy but they won’t give this diagnosis as he already has a hydrocephalus diagnosis.

I also want to mention that we attend physio privately every week and Sinead has been an amazing help to Kai’s progress, we would be lost without her

If you are still reading we have a breakdown of some of last years costs which we anticipate will be higher. We will be travelling as a family as we need to hire a car (not feasible to go without a car) and mummy would never be able to drive over there and Kai wouldn’t go to NAPA with daddy

Flights = 1,500

Accommodation = 4,000

Treatment = 6850 (May differ this year as we did different therapies in Jan)

Car Rental = 2,000

We had lots of other costs too of course but these are the main costs.

We are hoping to plan some fundraising events over the next couple of months. We will update more over the next couple of weeks