Harlan’s Rare Genetic SCN8A fight for life

My name is Beck , and I have the privilege of calling myself “ mum “ to Harlan.

Harlan is an 8 year old little boy living with a rare genetic condition called SCN8A . Harlan experiences relentless life threatening seizures that don’t respond to medication, mobility issues and a range of health and disability related issues as a result of SCN8A.

Harlan has been heavily restricted to accessing the things he needs and the things he loves as a result. He needs oxygen, resuscitation equipment and other medical equipment with him at all times.

Harlan’s condition is life limiting in every sense requiring intensive medical intervention, resuscitation and hospitalisation weekly.

Right now harlan needs a wheelchair accessible van that he is able to travel in whilst remaining in his wheelchair/adaptive special needs chair with ramp access and we are asking for your help to make that happen.

https://I'm on Instagram as itsaharlanthing. Install the app to follow my photos and videos. https://www.instagram.com/invites/contact/?i=76cndjccx3mc&utm_content=pzeziw8 My husband and I have exhausted all avenues of assistance with this need and have decided to turn to fundraising to help give harlan the quality of life he deserves and access to appointments, therapy and his very new bucket list of adventures. With SCN8A being life limiting, we want to make the most of what time we have, and give him access to the best resources, therapies, and care.

if you are able to, we would be so appreciative of any support to give harlan the very best life.

please feel free to follow our journey in the Instagram link provided #itsaharlanthing