Hailey's Wish

Description

Hailey's Wish is a non profit organization founded in honor of Hailey, my neice and an amazing little person who died in 2006 from a mitochondrial disease. As stated in our mission statement we are working to assure that every child with a possible mitochodrial disease has a chance for early diagnosis and better quality of life.... one day we hope to be part of finding a cure! We sponsor a Grand Rounds at CHOC (Children's Hospital of Orange County) this is an Educational Program for Physicians and Medical Professionals helping them to better understand these diseases. We are so fortunate to have the ongoing support of Dr. Jose Abdenur of CHOC and Dr. Robert Naviaux of UCSD. Through our website we are contacted regularly by people all over the world looking for help and whenever possible, we deliver it - at this time we do not provide individual donations as all the money we raise goes to research and education but we are committed to making sure that no one contacts us without becoming better informed - we put them in contact with the right people, get their children to the right places and help to find answers and support. We are here to let them know they are not alone. Research is such a key thing for us - and recently Cristin (Hailey's Mom) received this email from Dr. Robert Naviaux at UCSD: **** "Hi Cristin, Your Hailey's Wish support from 2011 went to help us develop completely new methods in metabolomics to monitor mitochondrial dysfunction in children and in the research laboratory. We recently received a grant to buy a new, "NextGen" mass spectrometer for nearly $0.5 million. Using this machine, we have been able to see metabolites in blood and urine that were completely invisible before. Hailey's Wish support has helped us apply this machine to state-of-the art studies that are showing deep connections between mitochondrial disease and autism. I believe these studies will lead to completely new ways of treating children with mitochondrial disease and dysfunction. Our plan for this coming year is to develop a breath test for mitochondrial disease to help doctors rapidly diagnose mitochondrial dysfunction even before gene testing can be done. This breath test could help prevent the need for muscle biopsies in many children and help to speed proper diagnosis and to help measure the benefits of new drugs that are studied in clinical trials. I have attached a copy of a recent publication of mine that cites Hailey's Wish support. Sincerely, Bob" **** Again We are so fortunate to have the support of both Dr. Abdenur (who was Hailey's Doctor) and Dr. Naviaux - they are both incredibly brilliant and kind and in a world where it is not always they case, they are accessible. Working with them brings us such hope! If anyone would like to see the article Dr, Naviaux wrote, please let me know. Amy@haileyswish.org Hailey had to have muscle and liver biopsies and the anesthesia from these procedures brought about tremors that she had until the day she died.... these new tests will allow doctors to determine diagnosis with far less invasive methods (no anesthesia) which will allow a much higher quality of life. THIS IS ALL MADE POSSIBLE WITH YOUR GENEROUS SUPPORT AND DONATIONS! Hailey was a joyful funny loving little person and I know that her memory lives on in each life we are able to touch! Thank you for helping us to honor Hailey in this way!