Support Tama to walk again after Major Spine Surgery

Ten years ago, when Tama was 3, we fundraised to help him learn to walk. Through loads of therapy, love & support he incredibly took his first steps at age 5 at the NAPA Centre Sydney!! Now he faces major spine surgery and we want to support his journey to re-learn to walk.

Tama was born with a rare condition called Pura Syndrome - a deletion on his Pura gene. He has hypotonia (weak muscles) but loves to walk and could easily walk 100 steps on his own! He is non-verbal and has a mic-key button to feed him to his stomach. At age 10 he developed daily seizures, and needed to use a walker for safety and fatigue. At age 13 he has developed hip dysplasia and scoliosis (curve of the spine) which is now over 80 degrees and progressing rapidly. If the scoliosis gets worse he will start squashing and damaging his internal organs. He needs major surgery to insert two rods down each side of his spine from his neck (T3) to his pelvis, to fuse his spine. Sadly this surgery will stunt his growth and he won't be able to stand straight again (he'll be stooped), but there is hope he will walk again with a walker. We are fundrasing to take Tama to two NAPA Intensive Therapies after his surgery - a cost of over $40,000 for therapy, flights & accom.

Tama has endured so much in his little life. He is the most beautiful soul and despite all of his challenges he spends his day smiling & bringing joy to others! We want to help him learn to walk again after surgery and continue to live his best life!