We’ve been home for a few days and it is all settling in. The adrenaline rush from seeing Claire swell with pride has subsided a bit. As I have spoken with close friends I have shared just how scary the whole thing is. Walking out of an airport in a city that is completely unfamiliar with your very vulnerable child with no idea where you can get food to feed them, it’s frightening. What carried me in those rough hours were the messages from friends and my virtual cheerleading squad on facebook. Here is the thing that keeps filling my head and my heart, it is so much harder than it looks. The families that are participating in the different research projects are literally emptying there hearts and their wallets to do it. Families are holding garage sales in between hospital visits to cover the costs of hotel, eating out and cab rides. As I speak with these families and I hear their exhaustion my heart breaks. Then I think. We are better than that. The Rett Syndrome community is one of the most dynamic groups that cares for each other in ways that boggle the minds of outsiders. We have pulled together to push for inclusion and education, we have had strollathons and gardens of hope to raise money for research. We have been there for each other over extended hospitalizations and unexpected surgeries.
Here is the thing. Right now, there are families that need help. 14 families are currently in the 2nd half of phase 2 for the IGF-1 trial. This involves 25 days in Boston over 3 trips inside 20 weeks. They aren’t admitted and in a hospital, they just have to go for a few appointments a few time and spend multiple days off in a strange city away from their families. After just one day there let me assure you, it isn’t a vacation, it is a challenge.
Let’s pull together to help these families? They have already done this once and are in the final stretch. Could you help me help them? When we unite as a community it is one of the most glorious things, we all benefit. If we all pitch in we could really make a big difference for these families that have stepped up for all of us in Rettland.
Would you consider making a direct donation, of any size? If you don’t have money but would like to help in some other way to encourage these families, email me at firstname.lastname@example.org This is what Rettland is about, coming together to help each other out. If the Rettland Foundation can get some more donations we can turn around and start helping the families that are out there bravely paving the way with encouragement and support. I would love to get them some money for food so that when it’s lunch time and they have to eat out, they can be reminded of all of the people behind them, cheering them on in this endeavour.
Thank you for being on this journey with me and feel free to share this as the more people that unite in this effort the greater our victory will be.
You can visit http://rettland.org/donate/ to donate online or you can send a check Rettland Foundation at PO Box 7362 Santa Cruz, CA 95061