Hello, we are Storm and Peter, and we are asking for your help to save our son.

Our precious son Grayson entered the world on 02.12.2021 at 07:09am. We held him close, breathed in his sweet newborn scent, and began what we believed would be a lifelong bond between parents and son. And when his big sister arrived to meet him for the first time, glowing with excitement as she finally held the little brother she had been waiting for, our family felt complete. As Grayson grew, he revealed himself to be the gentlest little soul. A happy, loving boy with a soft heart and a bright smile who loves anything to do with airplanes.

Early on, we noticed that something was wrong. On the inside, our son was thriving, full of life and heart. On the outside, his body did not keep up. Many developmental milestones were not met. He struggled to crawl. And while other boys his age were walking, he was still crawling. He cannot jump, run or walk up and down stairs without help. Grayson also struggles to speak and express himself, often becoming frustrated when his feelings can't find their way into words. Maybe we can all say we’ve felt this, in our own way. Watching him want so badly to communicate, to connect, to be understood, and to play like his peers — and not being able to — is heartbreaking. Grayson’s heart breaks daily in the hopes of living the way children around him do.

And so began our journey to save Grayson. First up was a battle with the medical profession. When we first saw symptoms, we were reassured again and again that he was simply a “late bloomer.” There was nothing particular we were advised to do.

But a parent's instinct is powerful. And the raging worry in our hearts never disappeared.

After months of searching for answers, and watching our little boy struggle, we continued to seek medical help. He was eventually tested for Duchenne muscular dystrophy. Duchenne is a rare and devastating genetic condition that causes muscles to gradually weaken and break down over time. It affects how children walk, play, breathe, and eventually even how their hearts function. Given Grayson’s symptoms, he needed testing. We hoped with all our hearts for the best.

With the results, we breathed enormous gratitude. The results were negative. With smiles all round, we celebrated – our son, our luck, the grace given by this life.

Then, the phone rang again. That second call shattered our world. Our son had been diagnosed with Duchenne muscular dystrophy. They had initially missed it because his particular type is rare. In Grayson’s case, the gene mutation occurs at a different site on the exon than what is common.

In a single moment, the future we had imagined for him disappeared.

No parent is ever prepared to hear the words of a diagnosis, to feel the grief of a future conditioned by illness. To feel the heaviness of that horizon.

When we look at our beautiful little boy, we see the same heart – the same smile, the same giggle towards his sister. But we see him now and know the prognosis, what awaits his small body, still so young.

It could have happened to me. It could have happened to anyone. There is no point in asking the why of these things, but the senselessness of his condition is beyond our ability to grasp.

There were days when grief felt unbearable — when the weight of the diagnosis pressed down so heavily it was hard to breathe. But alongside the fear, we remain his parents. We are steadfastly committed to seeing the best for him, and the best had to exist beyond just fear. Something unexpected began to grow. Hope.

This hope began to take the shape of true possibility.

There is treatment for Grayson, and I’m writing because I need help. Grayson needs help.

Understanding Grayson’s Condition

Grayson has a rare exon 65 splice-site mutation in the DMD gene — the gene responsible for producing dystrophin, a vital protein that protects and strengthens muscle cells.

Because of where his mutation sits, Grayson cannot benefit from the gene therapies that some other children with Duchenne are able to receive. Those treatments only work for certain mutation types.

For Grayson, those doors are closed.

But there is still one extraordinary possibility.

The Treatment That Could Change His Future

Grayson qualifies for a highly specialised one-time infusion designed for children with mutations like his.

This treatment is not gene therapy — it works differently — but it is the only medical option available that could significantly slow the progression of his condition.

The infusion is designed to slow muscle degeneration, protect muscle strength and function, preserve mobility and independence for longer, extend both quality and length of life – literally keeping his heart beating, and greatly extending the time he has without the need for a wheelchair or respiratory support. Unfortunately, this infusion named Elevidys is not available in the Uk or Europe and we would have to have this done in the US. 

The cost is $3.2 million plus hospitalisation and associated expenses, bringing the total up to $3.5 million. 

It is given once, but its effects last for years. For Grayson, it represents something priceless: time.

More time to run.

More time to play.

More time to laugh with his sister.

More time for us to spend with him.

More time to simply be a child.

More time to live.

Why We Are Asking for Help

The heartbreaking reality is that this life-saving treatment, is not something we as a family can financially afford.

It is not funded by public health care or standard insurance pathways, which means families must raise the money themselves. It is only available in the U.S.A.

Without this treatment, Duchenne will continue its relentless progression — slowly taking away Grayson’s strength, mobility, and independence, as well as greatly shortening his life.

With it, he has a chance to change that path.

This is not about giving our son something extraordinary.

It is about giving him something every child deserves: a future.

How You Can Help

We are asking for your help in giving Grayson the chance that medical science has made possible.

Every donation and every share brings us one step closer to the treatment that will change the course of his life.

Grayson is a beautiful, gentle little boy who has already shown more strength than most of us will ever know. He is a little soul who fought to be here.

And now we are fighting for him.

He deserves every chance the world can offer him.

And with your help, we can fight for that future together.

Please, help us save Grayson’s life.