Help get Alfie back to the NAPA clinic!

After some delays due to seizures in July 2023, we were able to attend NAPA in February 2024 and Alfie's development has been amazing and we want to get him back there to learn to walk!

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.

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.

****Please see our previous Givealittle page for Alfie here https://givealittle.co.nz/cause/help-get-alfie-to-the-napa-clinic****