Blog
We got some updated news from the doctor/scientist in Toronto, Canada whom we sent Gavin’s cells (Fibroblast cultures). They did the first short term treatment test and the results were not so successful. The goal is to see if the experimental drug (Pyramethamine) will increase Gavin’s Hex-A residual activity through a short term testing hoping for a 3 to 8% increase, but the treatment only resulted to a 1.2% increase which is even less than what the patients with Adult Tay Sachs start out with. According to Dr. M, it is generally believed that ~10% of normal Hex-A activity is compatible with a normal life, but “normal” Hex-A activity itself varies by above or below 50% of the general population so that critical 10% residual Hex-A activity could be anywhere from 5 to 15%. Based on their values, they determined that currently, Gavin has a 1.8% residual Hex-A activity which is extremely low and Adults with Tay-Sachs have at least 5%. A normal human being have at least 45% or above of Hex-A activity, but truly a person does not need that much to live a normal life. Since the first test did not go so well, Dr. M said that their next mission is to do the longer term treatment testing on Gavin’s cells to see if they respond to the experimental drug. Often times, Dr. M stated that there are better results with the longer term treatment than the shorter term treatment. It will, however, take a few more months until we get the results so we hope and pray that the longer term treatment will respond to Gavin’s cells and will greatly increase his Hex-A residual activity. I know that this is not the long term solution for a cure, but if it can buy us more time until Gene Therapy will be available for human trials, then all we can do is continue to pray that this will work for Gavin.
Gavin turns 4 today! Ferd and I went to Gavin’s school for a mini celebration with his classmates @ Del Sur Elementary. The class sang songs, read books, and ate cupcakes in honor of Gavin. Special thanks to Ms. Susan, Ms. Joline, Ms. Kit, and Ms. Ginger for joining in on the fun. Gavin also loved it when Ms. Susan played the guitar for him. We also met Gavin’s wonderful nurse, Ms. Susie who simply adores Gavin. It was truly a wonderful birthday morning for our lil angel.
Thank you all for your continued thoughts and prayers for our family and most especially for Gavin. He is doing well for the most part and has gained weight since the feeding tube, but continues to lose his gross and fine motor skills. I just wanted to send you an update about his first fundraiser- “The Christmas Card Fundraising Drive” sponsored by my cousin in Illinois. If you would like to pre-order home-made Christmas Cards, please visit the link below. All proceeds from the Christmas Card Drive will be donated to my son Gavin and to the Cure Tay-Sachs Foundation. Here is the link to pre-order the Christmas Cards if you are interested. You can either click on it or copy and paste to your browser:
Dr. Vasquez did a great job. Gavin is currently resting. He is often times uneasy which is our que to give him more pain meds. Right now, he is resting and doing fine.
