Help get Alfie to the NAPA clinic
Fundraising to help get Alfie to a physical therapy intensive in Sydney, October 2023
Canterbury
At 5 months old, Alfie was diagnosed with infantile spasms, a serious type of seizure. This lead to on-going treatment & testing, which found a very rare genetic neurodevelopment disorder - FOXG1.
FOXG1 is one of the first & most important genes for early brain development. When impaired, it causes cognitive & physical disabilities & medical complexities.
Alfie has daily seizures, is nonverbal, non-ambulatory, needs a feeding tube for nutrition & medication and is developmentally delayed.
Alfie requires 24/7 care & is 100% dependent on others, especially mum, Lu, who is unable to work due to the level of care Alfie requires.
It’s been a hard journey, including countless hospital stays, specialist appointments, weekly therapies & practicing skills at home daily.
Despite this, Alfie is an absolute delight & brings so much joy - those who know him love his big goofy grin, infectious laughter & blowing raspberries.
Alfie has a life changing opportunity to attend a therapy program in Sydney called NAPA.
He will attend 5 days a week for 3 weeks working toward goals to improve his quality of life including independent eating, communication, crawling, & pulling himself up to sit, stand, & walk!
However, this great opportunity comes with a heavy price tag. On top of the cost of the therapy program, there is accommodation, food, transportation, etc. Please join us in supporting this amazing family.
To learn more about NAPA: www.napacentre.com.au
and FOXG1: https://foxg1research.org
Use of funds
Money will be used to find getting Alfie to the NAPA clinic in Sydney for a 3 week intensive.
If we're unable to go or not enough is raised, then funds will either be donated to The Champion Centre or kept in Alfie's account for future needs around his medical care.
Latest update
A second NAPA intensive 13 March 2025
First of all, thank you so much to everyone who helped us get to NAPA last year. It was an incredible time and Alfie had so many gains from our time there.
We're currently trying to get back to NAPA again this year with the goal for Alfie to learn to stand unassisted and walk.
We have had a new article done on us from the press which you can read here - https://www.thepress.co.nz/nz-news/360611502/canterbury-mum-hopeful-fight-give-disabled-son-best-chance-possible
We've also set up a new Give A Little page in hopes of being able to raise the 25k to get us back. We'd love for you to share this around to everyone and help get Alfie back!
Thank you all again so so so much, words can not adequately say how grateful I am to everyone.
Latest donations
Who's involved?