Help Tama fight SMA
Tama is a 3 year old boy with SMA, a terminal illness with a very limited life expectancy. Help Tama get the treatment he needs.Bay of Plenty
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.
Milly Geddes' involvement (page creator)
Tama is my nephew. I just want him to have the best quality of life possible.
Use of funds
Updated Use of Funds on 01/11:
Treatment for Tama. Also any medical expenses, and help with financial strain due to this disease
The money would provide for the family's travel expenses and additional care that Tama requires. We are hoping to raise enough money to buy a van suitable for Tamas power chair as the car they have now is not reliable.
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We need your help now more then ever! With the new budget announcement, pharmac are still not budging with the funding for Spinraza. Tama is 4 in July and we would like to create some memories and a birthday bash for him we will never forget.
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This page was created on 17 Jun 2018 and closes on 21 Dec 2020.