My name is Akashen Nundikissoor. I am raising funds for our daughter Arushi, age 3. We are from Kwa-Zulu Natal
At 9 months of age our child has been diagnosed with a rare genetic disorder called, Spinal Muscular Atrophy (SMA) Type 1.
Here's a brief overview of SMA:
In SMA, the nerves that control muscle strength and movement break down. These nerves (called motor neurons) are in the spinal cord and lower part of the brain. They can't send signals from the brain to the muscles to make them move. Because the muscles don't move, they get smaller (or atrophy).
The signs of SMA can vary. Some babies with SMA are "floppy" and don't learn to roll or sit at the expected age. An older child might fall more often than kids of the same age or have trouble lifting things.
Life expectance for SMA Type 1 - 18 months to 2 years
There are currently 2 treatments available, namely Spinraza, and Zolgensma. However these treatments are not available in South Africa. We have made applications to the Medical Control Council (MCC) and have obtained approval to bring the treatment into out country.
The issue arising now are the costs of the Treatment.
Spinraza costs close to $500 000.00 USD annually for the rest of her life.
Zolgensma costs close to $2.125 million USD. This however is a once of treatment, and the best option for her.
Arushi is an absolute fighter and she continues to do so, defying the odds that are against her to survive.
The Zolgensma is a recently FDA approved treatment for SMA.
This is a gene therapeutic agent – that allows for improved function of the anterior horn cells, and thereby improves her muscles and her outcome.
This treatment will allow for Arushi to have a better quality of life and would ultimately rid her of the disease complications and hopefully the disease all together.
We are receiving no assistance from our medical aid as they refuse to accept that this condition is very similar to Muscular Dystrophy, which is a PMB condition. Therefore they do not pay for any expenses other than Hospital Admissions.
She has a fighting spirit and has defied the odds by making it past the 2 year survival expectancy.
We have had 2 close encounters where we were close to losing our child but her will to live and caring doctors have brought her out of immediate danger.
If Arushi does not get treatment she will surely demise of complications of SMA- such as respiratory compromise, skeletal deformity and eventually cardiac arrest.
At present she has defied all of this and we aim to give her a fighting chance to a better quality of life.
Reaching our target would mean that our child would receive life changing treatment.
All funds raised would be put toward acquiring treatment and assisting with immediate medical expenses.