Little By Little

It has been a month since we shared this heartbreaking world we entered a few years ago. Your messages and support have really been a catalyst into a brighter more positive existence. It’s really so hard to describe this new feeling of being lifted up verses crumbling under the weight of it all. We’ve always been hard working and productive and go getters on our own path. To have to ask for help and realize that this was absolutely beyond reach in a reasonable time frame was soul destroying. Time is what we do not have. Every day matters to a rare disease family.

We spent a lot of time worrying, panicking, not knowing where to begin.

The last few years have been brutal, as they have been for many. So we truly appreciate the kindness and generosity that has raised over 140,000 dollars so far. These donations ultimately buy us time. Time for research and development, time for treatment. Time with our child.

We are beginning to make connections. We are finding those with knowledge and meeting experts, some are also able to come to us offering guidance.
This is down to the sharing of this page. It truly matters and it has reached a lot of people. So we thank you from the bottom of our hearts for not only the donations, but the impact on every level. It is countless hours of searching, making calls, reading, going to appointments. Begging people to answer questions. Learning about all things genetics, becoming an expert in a disease, when you thought you were a parent, a singer and an artist.

So thank you for choosing this cause. Thank you for helping us to climb this mountain little by little. Thank you for filling our lives with a little hope when we were so broken and lost. Please continue to share when you can, and we will be adding more updates when we have news and developments. Hopefully that is coming soon.

Happy Summer, hope to see you out there on the road.
Love,
Zoe, John & Frances x