A bike to share family moments before the end

Hi,

Before presenting our son, I would like to apologise for my English. I'm a native Belgian French speaker.

We are a family with two kids, a girl aged seven years and our son aged nearly three years.

Our son's name is Kyan, and he has a rare sickness called Aicardi Goutieres syndrome. He is the 122nd child in the world to have contracted this sickness.

Here is a link which describes a bit about this sickness: https://www.orpha.net/consor/cgi-bin/OC_Exp.php?Expert=51&lng=EN

I have written the words "a bit" because each child having contracted the sickness has developed different issues, but a common part of it is well described on the website.

Kyan has the worst case of the sickness because he was born with it, meaning today, he is heavily disabled.

He has a brain issue that will never allow him to speak and maintain his body like a "normal" child (he cannot stand up or sit without medical equipment or an adapted chair). It implies he needs motor kine.

He has awakening kine to make him try to understand that there is a world around him because he does not perceive what surrounds him like a "normal" child.

He cannot hear us without his special hearing equipment.

He cannot see us after only a few centimetres. He wears today's glasses, but they cannot be really well adapted to his view because he cannot tell us how it is working.

He cannot normally eat because it falls directly into his lungs. So he underwent an operation for gastrostomy.

He has a lifelong lung infection causing issues like mucus inside his lungs. This implied he needs respiratory kine every single day.

We spent long periods of a year in the hospital, often caused by his lungs infection. As an example, a kid contracting bronchiolitis will stay around a week, but Kyan stays three weeks to recover.

His life expectancy is around ten years, and we want to spend the most moments together before he leaves.

It is difficult to find something where we are all together as a family due to his disability.

He cannot play with his sister or interact as we would expect. He is not smiling or laughing. We keep in our memory the only three times he smiled at the very beginning of his life.

We were searching for some activities, and before Kyan was born, we were used to riding bikes and having picnics, and we wanted to live this experience all four of us.

Doctors and kine explained to us he needs to be sensorial motivated, and the bike is a really good way to have sensations like feeling the wind, the sun on his skin, feel he is moving.

After starting to search for a solution and contacting many associations for disabled people, we met one called "back to sport" (https://www.backtosport.lu).

This association tries to help disabled people to do sport (specifically bike).

Thanks to them, we could test a particular bike which can be adapted to our son's disability.

Testing the bike has been a magical moment for all the family.

Our daughter has been so excited all the way long to be able to share this moment with her brother.

The most emotional thing has been our son's reaction: he had his eyes wide open, and he was turning his head around because he was feeling the wind.

He was moving his arms more than usual, and of course, because he was happy, and suddenly, maybe by chance, he grabbed my finger.

From that moment, he did not let go until the end of the ride.

We were so happy because this was a positive reaction, which is a rare situation for him.

Since that day, we have been sure this is an activity that suits him.

Unfortunately, this bike has a specific cost that we cannot afford.

We already have a lot of expenses for hospital costs, physiotherapy, palliative care, medical treatment and drugs.

We have decided to turn to you to help us realise this project of sharing a family activity by acquiring the bike.

This bike will give Kyan a break from his daily life and have pleasant moments.