The NAPA program is the only program of its kind in Australia and only recently came here from the US. The program provides state of the art intensive rehabilitation for children with neurological disorders. It goes for 3 weeks, is 3 hours per day 5 days per week and includes speech pathology, physiotherapy and occupational therapy. It is very impressive with equipment that has not been seen anywhere is Australia before. http://napacentre.com.au.
The NAPA program costs $7875. Three weeks accommodation for the family in Lane Cove, NSW, will cost approx $2500. I am adding these costs to the campaign where $6000 has been raised for the Electric Wheelchair.
Cleo's family is using the extra money (approx $1000) raised from the Electric Wheelchair aka "whizzy bug" to put towards the NAPA program, where she is enrolled to attend at the end of July. "We could not even be considering it if we hadn't had the funding you have organised for us. It is life changing for Cleo. Thank you so much." Berni, Cleo's Mum
Funds raised for Cleo's NAPA program and accommodation will help this family who to date have used draw downs on their mortgage to fund the exhorbitant fees of private medical specialists to keep their daughter alive. None of it has been subsidised or provided gratis.
Your support will be unbelieveably helpful to Cleo and her family. Thank you so much and I am in awe of your generosity. xx
GFM #1: Electric Wheelchair - June 2016:
Little Cleo is now 19 months old. She has passed all expectations after being diagnosed at 3 months with SMA 1 (Spinal Muscular Atrophy) and originally not expected to live more than 12 months. She appears to be thriving at the moment although still battling the crippling symptoms of the disease. Cleo needs an electric wheelchair and one has come available 2nd hand for $5000. We need these funds as soon as possible and appreciate any donation. Can you help?
Cleo is my son's chemistry teacher's (Chris) grand-daughter. As Chris and I passed in the school hallway one morning last year, he told me of the terrible situation his family was grappling with. At the time, Cleo was seriously ill and we are amazed she has survived. I met beautiful baby Cleo at this year's Maytime Fair and I want to help her as much as possible.
Chris' daughter is Bernadette and this is her email to her dad explaining the condition further:
Below is Cleos story. Any help we can get to fund her wheelchair would be greatly appreciated. Every time I write this journey it brings me to tears about how lucky we are.
My daughter Cleo was born in November 2015. At birth she was perfectly healthy and as a new mum who waited 35 years to have a baby, life could not have been more perfect. At 4 months of age our daughter changed our lives forever - we were told our gorgeous daughter had only 6 - 12 months to live ... at best. Our perfect little girl was diagnosed with spinal muscular atrophy (SMA) - a rare and fatal motor neuron disease that is most severe when developed in infancy, affecting 1 in 10,000 babies. SMA is the same disease killing Neale Daniher except it affects babies. SMA causes deterioration of the muscles because of a missing gene that prevents the body from making a critical protein (called survivor motor neuron SMN) that is needed to keep the motor neurons alive. Without this critical protein motor neurons die and as a result the muscles atrophy because they are not used. All muscles are impacted by the disease but it becomes fatal because not even the breathing or swallowing muscles are spared.
The cost of caring for a baby with SMA is exorbitant. Our daughter requires full time care and a team of specialist health practitioners including a neurologist, dietitian, orthopaedic surgeon, pulmonary specialist, physiotherapist, occupational therapist, speech pathologist and general practitioner/paediatrician. The government does not provide much financial support, equipment or other resources because the prognosis for babies with SMA is so terminal and it is felt that resources are better spent elsewhere.
There is currently no approved treatment and we were told that our beautiful daughter may not make her first birthday, and if she did, she certainly wouldn't make her second.
However, there was a clinical trial taking place globally to evaluate the safety, tolerability and efficacy of a new drug called Spinraza (previously known as Nusinersen). The drug trial had closed but we were able to get Cleo onto the trial and she was the last baby they would accept internationally. We didn't know if she was going to get the drug or the placebo. But we found out recently that our daughter was lucky enough to get the treatment which was later approved as the first ever treatment for this cruel disease.
Our daughter has been getting a little bit stronger each day. She has achieved motor milestones that we were told were impossible for her to achieve. She can roll, sit unsupported and only recently started to stand. She is now 19 months old and looking as though she will indeed make her second birthday. She never stops surprising us with her determination and smile.
Life is still uncertain, and she is very vulnerable - a small cold would still be fatal for her... However, there is a chance that she could continue to strengthen and be with us much longer than we had ever hoped for. Every day is a blessing and we are so grateful that our little girl is now old enough to be independently mobile. Whilst she cannot walk like other children her age, we have found a specialised mobility device designed for kids Cleo's age to help them develop, explore their environment and participate in as much as possible.
The look on Cleo's face when she realised she could move to get something for herself was priceless. The only issue is that to purchase her wheelchair we need to raise $5000. We would be so appreciative for any support available to help our little girl live life to its fullest potential.
- Karyn Young
- Judi Rogers
- Jane Sapuppo
- O Buccella
- Adrianne Harrowfield
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