Oakley's NAPA Journey

At Tree of Hope, one of the most common reasons for fundraising that we see, is  families needing to fundraise for various forms of therapy, due to a shortfall in NHS provision. NAPA is just one of those therapy centres we work with that our families attend, and with the opening of  their first new London centre in November 2023, we wanted to catch up with one of our families lucky enough to experience this amazing facility. Read on to find out all about Oakley and his NAPA journey!

Oakley is a happy, inquisitive two-year-old who is at his happiest when exploring the great outdoors. Oakley was diagnosed with Spinal Muscular Atrophy (SMA), type 1 soon after birth and received Zolgensma gene therapy at just 14-weeks-old which stopped the progression of the disease, but  still means Oakley require a lifetime of physiotherapy and specialist equipment., so funds raised through

Oakley’s family came to Tree of Hope to set up their fundraising campaign to pay for regular private physiotherapy at home, orthotics, and an adapted vehicle.

Oakley’s dad, Nick told us that “Zolgensma is a completely new and so far, unique treatment. The drug is not a cure but is obviously an amazing thing.  But we are always wondering what the future holds for Oakley and want to maximise his abilities and allow him as much independence and choice when he is older as possible.” Nick went onto say “He is  so busy with appointments, so it is hard to give him a normal childhood.”

Mum, Amy has given up work to become Oakley’s full-time carer which means endless medical and logistical administration, as well as extensive research into the best treatments available. Nick commented that “the whole thing can feel a bit lonely. There is only a small group of people who really get it but we want to help people understand. We also want to help the NHS understand what SMA children need by demonstrating the benefits private therapies can bring.”

The family are determined to maximise Oakley’s chances for greater independence in the future and have already  adapted their house  to create an accessible and extended home for Oakley, who was eligible for the maximum council grant towards this, with the rest provided by family. The wheelchair accessible garden, funded by Nick’s brother, is also a key feature with level access from the house, allowing Oakley to get outdoors all year round.

Now the family are turning their attention to his booked trip to NAPA in September 2024. To help them raise the funds they need, Nick has embarked on an ambitious North Atlantic Challenge, whereby Oakley’s supporters are being asked to walk, row, cycle or ski “across the Atlantic” and collectively achieve a total of 5,100km, roughly equivalent to the distance from Oakley’s home to the NAPA centre in Boston. Whilst Oakley will be attending NAPA’s new London centre, dad, Nick, thought the challenge to Boston would be all that more ambitious and worthy of a generous donation! They also have one friend is running the Manchester marathon and another  taking part in a long distance cycling event!

Having supported many families in their fundraising efforts to attend NAPA’s flagship centre in Boston, USA, we were over the moon to hear that a new Neurological and Physical Abilitation Centre in London was to open its doors to families from November 2023, so our Family Support Officer, Caroline, was delighted to go and visit.

NAPA was founded in Los Angeles by Lynette LaScala in 2008and centres around the world offer intensive therapy services to children with a wide range of neurological and developmental needs.

An individualised intensive three week therapy programme is designed for each child using a combination of speech, physical, occupational and other innovative therapies such as Dynamic Movement Intervention therapy, the Neurosuit and the Spidercage, these just being some of the many techniques they use.

NAPA London’s therapists have the highest level of professional qualifications, with many holding professional doctorates in PT, OT and Speech, and all therapists also undergo 12 weeks of training in the intensive model to deliver therapy to the NAPA standard.

One of the things that struck Caroline the most on her visit  was the huge sense of camaraderie between the families. Caroline explained, “There is a large parents area where the children can have a break and a snack between therapy sessions, equipped with microwaves, kettles and a fridge to make things easy for the parents, and a relaxing area for the children to unwind.” Families are  encouraged to connect with other parents via the NAPA Centre Facebook page and Whats App group allowing strong relationships to be formed with other parents sharing a similar experience.

Centre Manager David Grocott first came into contact with NAPA when his son Angus started intensive sessions in the summer of 2018 to treat his quadraplegic cerebral palsy and quickly saw the impact of the intensive model and the benefits that it could bring, not just to children but their entire families.

David told us “the thing that struck me when I first went to NAPA in 2018 is that it is unashamedly deeply ambitious. Not unrealistic but very ambitious. We also believe in having fun with children, being informal, and never, ever giving up.” He went onto say “It is my personal aim that every child who comes here, and every parent, comes in and breathes a sigh of relief. We work hard and have fun and I will do all I can to help families in the UK.” We will never give up”! Said David.

As a parent of a special needs child himself, David understands the challenges and obstacles that parents face, but recognises that “working with charities such as Tree of Hope enables us to bring more people more choice in therapies. It’ll be great to see what can be achieved in the future!”

Tree of Hope are delighted to be helping families like Oakley’s to raise the funds they need to attend the NAPA Centre. Oakley’s dad Nick shared his advice to families looking to fundraise, he explained “Follow the advice you are given. Tree of Hope provide lots of tips which are really helpful, particularly at the beginning when I didn’t really know what I was doing. I would also suggest looking at what other fundraisers are doing. We have been blown away by the support we have received.”