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

For: Saya Marchand
Adelaide, SA, Australia
Organizer: Julien Marchand
$40,100
of $50,000 goal.
Raised by 385 donors
80% Complete

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 November 6, 2017

UpdateImage

Posted on November 6, 2017

Last week Saya appeared in the main newspaper in South Australia! She had been interviewed for the most perseverant student competition where she came second. However the story took a new turn and her future journey to the US. Here is the article.

We are so lucky that it raised further awareness about Saya.

One of the outcomes is that someone has offered to paint her walker in pink! Pictures to follow soon! 


Posted on October 21, 2017

UpdateImage

Posted on October 21, 2017

MORE GREAT NEWS!

We were planning Saya's surgery in June but thanks to you quick and overwhelming we were able to bring forward her appointment by 3 months! We are so excited! It happens to be on her dad's birthday, what a present. 

Thank you to all of you amazing donors! 

手術が3ヶ月早まって、なんと旦那の誕生日当日(ホワイトデー)になりました!ドネーションも300万円以上集まり、リハビリ強化に向けてさらなるプラン中。


Posted on October 17, 2017

UpdateImage

Posted on October 17, 2017

Amazing! This morning we woke up with the fundraising website sending us alerts: YOU HAVE REACHED YOUR GOAL!    

あっという間にゴールを達成しました。ドネーションしてくださった方ひとりひとりのおかげです。感謝の気持ちで一杯で家族一同何か特別な力に守られているように感じます。   ゴールを過ぎても未だに集まるドネーションにまた感動が止まりません。

術前術後のセラピーの費用に当てさせていただきます。通常のセラピーよりずっと充実させることができそうなので、より確実な結果が出せるのではないかとまた希望が増えました!   

We still cannot believe it. We started a month ago, thinking that it would take us four months to raise the deposit and another five to pay for the full amount. We would like to thank all of you, friends, family, work colleagues and kind strangers.    

You have given us not only a surgery for Saya for her to walk but you have shown us that we were not alone in our daily battle, we are supported by hundreds of people. It’s a wonderful side effect of this fundraising which was totally unexpected.   

Friends who have organised fund raising events for Saya in the coming weeks and other people who had not had the chance yet to give have already reached out to ask if they could still help. We are really blessed to be in this position.    

So we have decided to leave the fundraiser open for a little longer. It will translate in intensive rehabilitation for Saya to learn how to walk!    

We were planning on her regular 1-hour physio session twice a week (on top of occupational therapy and speech therapy…) after the surgery. Now we could add up to 5 hours of physio a week for two months, at $155 per hour.   It would support her in developing her new ability. She loves her physio, Brigitte, who really knows how to make those sessions a lot of fun.   

Thank you for caring and sharing this fundraiser.   

Saya, Taiyo, Sachiko and Julien  

About the Organizer

Report Fundraiser

Report Fundraiser

Please report potential fraud and Terms of Service violations only. Personal disputes will not be reviewed.

We require this in case we need to contact you for further details.*

* YouCaring will not distribute your phone number to any third parties or use it for marketing purposes.

Comments

Supporters

Add Our Donation Widget to Your Site
Grab Our Widget

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

Grab Our Widget
Donate NowFacebook Share Button