Help cheeky 4-year old Saya walk for the first time!

For: Saya Marchand
Adelaide, SA, Australia
Organizer: Julien Marchand
$46,971
of $50,000 goal
93% Complete
Raised by 417 donors
This fundraiser is closed. Thank you for your support!

The Story


In short:

Saya started her life with a battle. An accident at birth caused her a brain damage which led later on to cerebral palsy. Since then we have been discovering the impact of that incident on her daily life. She cannot walk but desperately wants to. There is a medical intervention available in the USA that should allow her to walk independently. The medical cost and the trip expenses amount to AU$29,000 and we need your help. Then she requires intensive rehabilitation for 3-6 months. Thanks to this fundraiser the surgery is now booked for the 14/03/2018!


The full story:

Saya is no ordinary little girl; she can speak three languages despite her recently developed stutter: English, Japanese and French. She has the cutest smile. No one can resist her! She keeps trying until she succeeds, whatever the obstacles are. 

Mentally Saya has been developing nicely, even if she is a little behind her peers. Her challenge has been a physical one. She opened her right hand for the first time when she was one after we found a great therapist in another state, QLD. She can now use her left hand at 80% and her right hand at 40%. Her legs are her biggest problem; her muscles are so tight that she cannot control them properly and consequently cannot walk. At home, she moves around on her four. Outside, she wears orthopaedics boots (AFOs) and shoes, uses a walker or a wheelchair. 


Each regular activity is another challenge for her, from going to the bathroom to eating or playing on the playground. However, she is perseverant; she will keep on trying until she gets some results. Saya simply loves sports. In spite of all her physical challenges, she cannot stop playing any sport involving a ball. This is nothing compared to seeing her laughing in the pool, her natural environment where she can swim, in her own way, for a long time.


In terms of treatment, Saya spends minimum two days a week with a collection of therapists to help her build her muscle strength to gain control over her body despite the tightness. Then every six months or so she would get an injection of Botox at the hospital which acts as a nerves killer to relax her muscles. It is followed by a cast on both legs that she needs to bear for a month. So the Botox relaxes the tightness, but then the cast makes her lose her muscle strength. She then works on using her muscles and rebuilding the strength she lost with the therapists until the effect of the Botox wears out, and she needs another injection. The Botox cycle starts again. It is a very frustrating experience for her. However, this is the standard treatment in Australia,  France and other countries. 


We are always looking at other treatments, starting with Vojta which involved us applying pressure points on her four times a day for 18 months. Everything to help reduce her tightness in her muscle. There is everything out there, including charlatans preying on hopeful and desperate parents. We found that the most reliable source of knowledge is other parents in the same situation. This is how we learnt about Dr Nuzzo's different approach. 


Dr Nuzzo is based in Summit, NJ, USA and has been doing his medical intervention on children with cerebral palsy for over 20 years. He has published about it several times in medical journals. Dr Nuzzo specialises in Selective Percutaneous Myofascial Lengthening (SPML).  In layman terms, he does very small cuts close to the muscles, in a day surgery. A cast follows it for a month. It relaxes the muscle but only has to be done once in her life! It means, no more frustrating botox cycles! It means freedom for her. It means being able to go to primary school next year. It means living a vertical life.


Here is Dr Nuzzo's comment after reviewing a set of videos and X-rays from Saya:

"We have 100% batting average for this subset of kids for independent walking after SPML. It may take a short while for balance mechanisms to adapt to new height and uneven surfaces, etc., but they ALL get there.


The medical intervention and related expenses are not cheap:

- $16,260 for the medical facility & Dr Nuzzo's fee for both legs

- $3,200 for Dr Nuzzo's fee for her right arm (under review)

- $3,745 for the anaesthetist  

- $4,000 for the flights  (Mum, dad and Saya).

- $1,000 for local transport, accommodation and other living expenses.

- $900 of Paypal transaction fee

-The intensive rehabilitation is done through her regular therapy center, at $150 a session. She will require multiple sessions a week.


Fundraiser Updates

Posted on April 3, 2018

UpdateImage

Posted on April 3, 2018

It's been 3 weeks  since the surgery in the US. A lot of you asked me how it went. Well, Saya started rehab last week. Last weekend we went to the Kite festival at Semaphore (Adelaide). I walked hand in hand with Saya on the beach! A month ago I would not have dreamed of it. Of course she fell every 3 steps but she laughed because she loved the fact that she could try to walk like everyone else. 

It's such a fantastic feeling. There is a long road away of rehab but it's up to her and she is determined!

Thank you so much for your support!


Posted on March 15, 2018

UpdateImage

Posted on March 15, 2018

The surgery went well! The doctor is extremely confident re Saya being able to walk. We couldn't believe our ears! We will take it one step at a time and try not to get excited. After the surgery she was in pain because of the alcohol blocker injection, not because of the SPML.

This morning she is feeling better. She is happy  to be able to watch her cartoons on her iPad in bed! She has a cast on each leg but they are very light, already this morning she was able to crawl with them. She needs to keep them on for another 4 weeks or until her new braces are ready. We will rest another day in Summy, NJ and will then go to New York tomorrow for another 4 days without too much planned.

Life is good!


Posted on March 13, 2018

UpdateImage

Posted on March 13, 2018

Today we had the prep meeting with Dr Nuzzo in Summit New Jersey. When he saw her walking on her knees he said 'I don't need to see more, we will fix her, no problem'... We try to not get our hopes up but it's hard, we are so excited.
Saya got her main question answered too: there will be no needle involved well, while she is awake. She will get to sleep with a happy gas. She now needs to pick the flavour of the happy gas, she is hoping for chocolate!
For Saya and Taiyo the most exciting part of the day was to play with snow for the first time!

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