Update and 2nd Hope for Gavin Golf Tournament

I know it has been such a long time since I have sent any updates via email as life has been so hectic for all of us now these days, but I just wanted to let you all know that Gavin continues to fight very strong. This summer has been wonderful compared to last summer when Gavin was in the PICU for 1 month @ Children’s Hospital in Washington D.C. and Maryland. Knock on wood, but Gavin has been doing amazing these past few months. He has not been on continuous oxygen since late spring and has been seeing the doctors less frequently. We continue to do more of a holistic approach with Gavin in addition to his conventional medications as he has been responding to them very well. Gavin continues to see his faith healer every week and is also doing acupuncture, chiropractic therapy, aromatherapy, and cranial sacral therapy in addition to his weekly routine of Physical and Occupational Therapy and Doctor visits- so yes, I am a very busy mom while still working part-time. This summer, we wanted to avoid taking Gavin on a trip via plane so we took Gavin and the family on a California road trip up the coast to Monterey, Carmel, Pebble Beach, San Luis Obispo and Santa Barbara; Gavin surely enjoyed every picturesque scenery. It was beautiful. Audrey too is doing great, yet can be dramatic at times, but nonetheless she is great with her brother. Anyhow, this September 15, 2012 at the beautiful Mt. Woodson Golf Club of Ramona, CA will be Gavin’s 2nd Golf Tournament fundraiser that is being put together by our friend, Scott Hemsley. 50% of the proceeds from the golf tournament will go directly to the Cure Tay Sachs Foundation that directly funds the TSD Gene Therapy clinical trial initiative. As you know, there is no cure yet to this cruel disease, but gene therapy offers a lot of hope. As we speak, several toxicity studies and testing are being done before the FDA can approve a 1st phase human clinical trial by the end of 2012 or early 2013. It has been known that 6 kids of Juvenile Tay Sachs Disease will be selected for the trial, but whom of the 6 kids and how those kids will be selected are unknown. From speaking to one of the clinical doctors involved in the gene therapy consortium, only kids who continue to thrive and are less progressed from the disease will have a higher chance in being selected. Sadly, in the last few months, Ferd and I have had many friends from the TSD community lost their child especially our good friends, Flory and Ed Roman of Connecticut who lost Bela in June @ age 6. We do indeed live in a bubble that no one can fathom, but we continue to embrace and be grateful to the many family and friends who have and continue to reach out and have been a part of our lives in so many ways. The other half of the proceeds will go directly to Gavin for all of his holistic therapies, future experimental medication and medical equipment that are not covered by our medical insurance. At the moment, we need lots of golfers and donation of prizes for a silent auction at the tournament. It would be so helpful if you can help us spread the word via email, social networking etc… about this golf tournament.  If you are interested, please contact Scott Hemsley at or I have attached the flyer that has all the information and if a letter is needed for any business or corporate  sponsor, please let me know, as I can send that as well. Please feel free to share this event especially to your golfing buddies. What is more important to us is the ability to spread awareness of this disease and to speed up the clinical trial for gene therapy that offers hope to cure this disease. Thank you so much for taking the time to read this and please do not feel obligated if it is not possible. When there is life, there is hope, and hope is what keeps us all alive!

Jan

Category : Blog