SPINRAZA (nusinersen) is a drug developed by Biogen and approved by the FDA to treat Spinal Muscular Atrophy (https://www.spinraza.com for more information).
In Japan, it was only available for SMA type 1 until July 2017.
Now, it is available for all types.
Takami will start his treatment and receive his first injection in March 2018.
The cost is partially (greatly) covered by the Japanese NHI, however, it will be a real struggle to afford the rest.
Every amount will help reduce this cost to a minimum.
I truly believe that Takami will run one day, and we would like to invite you to run with us someday.
Thank you, and I wish you a wonderful weekend.
Aiko and Takami Maeda
One step closer for Takami to run and this is all thanks to your kindness and generosity!
He may not look it, but he’s enjoying wearing them, thanks to the car patterns on the casing.
Thank you from the bottom of our hearts. We are so grateful to have supportive friends and a loving community around us.
Our journey is still ongoing, and thank you for wanting to be a part of it.
May you have a wonderful day.
Aiko and Takami
Hey there everyone.
Typhoon Lan hit our area pretty hard, but no damage was done and we are all safe. Thank you for the messages for asking about our wellbeing.
The fund came into my account safely! Yay! So today, we’re meeting his PT therapist and we’ll pay for the shoes. Fitting and measuring was done a while back, but we couldn’t take them home without paying. We’re paying today and if everything goes well, Takami will come home with a new pair of shoes! Double yay!
This is all thanks to you, for your kindness and generosity. Without your support, this would have been very difficult, if not impossible, to achieve.
Thank you and have a wonderful day!
Aiko and Takami
A thousand thank you will not be enough to describe the amount of gratitude I feel at this moment. The love and support we received within the week (both in monetary and moral support) are more than we ever expected.
As you can see, my initial goal of 150,000 JPY has been reached (again, thank you!) and now Takami will get his braces! That is one step more towards his future!
I will be honest that for this campaign I was only thinking about his braces. Then a good friend of mine approached me and said that I might be forgetting the bigger issue. They reminded me that there will be more bills. There will be more medical equipments that I won't be able to afford. There will be more therapies and treatment, not to mention the back and forth transportation costs to get to those treatments. Then when he starts going to school there will more expenses.
The truth of the matter is, we need all the help we can get for as far into the future as possible and every amount we receive will be a huge help for Takami.
After much thinking, contemplating and discussions with close ones, I have decided to keep the funds ongoing for an unlimited time and amount.
Thank you for being a part of our lives, of Takami's future, and for wanting to join us in our journey.
Thank you and we wish you a wonderful day!
Aiko and Takami
The time I put up this campaign, I wasn't expecting to reach the goal anytime soon. When I woke up and logged in to check my dashboard, I was so surprised that we have reached 70%! I was rendered speechless and I'm pretty sure I cried myself ugly LOL.
I posted my campaign on facebook and soon after, my friends reached me personally and asked about Takami's condition and if it was OK to share the campaign on their walls. Some of them I haven't talked to in months, even years, but we just started chatting like we just met for coffee today.
It's incredible how a community comes together for someone in need, and I feel truly blessed that my son is loved and cared by many.
This has motivated me to work harder for Takami, to give back to the community, and to pay forward the kindness and generosity we have recieved to others in need.
This will also be a good experience for Takami, and me personally, that reaching out is a good thing. The amount of support and love we received in such a short amount of time is amazing.
Once we reach the goal, it will take about a week to process and as soon as it's done, we will pay for the bracers and it's one step closer for Takami to run!
Thank you for your support and love. Know that this means the world to the both of us.
Stay tuned for a picture update on Takami with bracers!