Help Tama fight SMA

Updated on 01/11

Tama is 3 years old and has been diagnosed with SMA (spinal muscular atrophy). This disease affects his ability to walk due to muscle wasting ending in a wheelchair. Treatment is not subsidised by pharmac for his disease in NZ due to the high costs but is available in other countries.

---

Tama is almost 2 years old. He was born in Hastings hospital into a loving family. When he was born, he was like other babies, however before long it was noticed that Tama was not meeting his developmental milestones in regards to his movement. After discovering this, and numerous attempts to address the concerns to a gp, the family were referred to a paediatrician. On Friday the 27th of October, 2017 Tama was diagnosed with Type 2 Spinal Muscular Atrophy (SMA) Type 2. Earlier this year, his diagnosis has been changed to SMA Type 1. Spinal muscular atrophy (SMA) is a genetic disorder that affects the control of muscle movement and no nerve signal. Having no nerve signal causes these groups of muscle fibres to waste away (atrophy) which leads to weakness of muscles used for activities such as crawling, walking, sitting up, and controlling head movements. We have been told that Tama will never be able to walk or crawl. He currently is unable to sit up unaided, and it is noted in his recent medical visits, that he is deteriorating rapidly.

About 68 per cent of children with SMA type 1 die before their second birthday and 82 per cent die before their fourth. Our boy will beat these odds, and we want to empower him to believe in himself as much as we do. Tama cannot roll or crawl and struggles with any sort of movement that other almost-two year olds enjoy. He is considered a prisoner in his own body. We have left an open goal for the funds raised, as Tamas needs are forever changing. Presently, the greatest need is a van or large car with a mobility hoist. The family's current car is unreliable, and has constant mechanical issues and due to size, Tama is able to move around unaided on his powerchair, but is restricted to his home, as it is too large to be transported anywhere. This would open up the world to Tama, and enable him to be mobile everywhere they go.

We have also been researching hydrotherapy and the benefit it has for children with SMA. A spa pool would give Tama temporary muscle pain relief, exercise, and a chance for the family to relax together between working, multiple medical appointments, and other baby, toddler and household needs. The family would also wish to dedicate what time they do have on spending it with Tama.

There are several informative sites on the web, if you would like to learn more about SMA. Awareness is incredibly important to us, as SMA is NZs number 1 genetic killer, this is due to SMA being a terminal illness, there is currently no cure.

Every donation will be incredibly appreciated, no matter how big or small, Every dollar counts. Thank you for your support.