Message from the Glut1 Deficiency Foundation
The Glut1 Deficiency Foundation is sharing this message from Drew’s parents, Pat and Jim Hemlock. It is their hope and ours that by sharing their family's experience, it can help answer questions and inform others in the decisions we all face and the risks and benefits we must weigh. We continue to recommend families discuss questions and concerns with the healthcare providers who know their personal circumstances the best and who can help decide what is best for their own individual loved one with Glut1.
Message from the Hemlock Family
Drew's Thank You to Glut1
The outpouring of thoughts and prayers has just blessed our hearts. To see how Drew’s smile affected so many people reminds us of what a precious gift we had in him. We know how strong our Glut 1 Family is and how we will continue to work to find a cure to help us all.
Drew’s story of life pre diagnosis, the unbelievable diagnosis, and then finding a way to feed the brain is so similar to everyone. It is with great comfort during Drew’s life journey we have been able to see how God steered his life. From our pediatric neurologist hearing Dr. De Vivo talk about doing spinal taps on kids with seizures in Chicago, to clinical trials in New York with Kris and Dr. De Vivo, to Dallas with Dr. Pascual and the C7 oil we have watched God work. Our God-guided trip had its up and down days, but we were always traveling forward. Drew always looked forward to his clinical travels and would mention how glad he was to be inspiring for other people.
Drew has been on the C7 oil since 2013. Some of you mention how suddenly the light switch was turned on. We watched how he suddenly had more energy and stamina, and his headaches became almost nonexistent. His constant and annoying drooling stopped, and speech improvement and seizure freedom were some of the noticeable changes. Others, such as sitting down and reading all the Harry Potter books, and long conversations were also noted. Yes, there were side effects but he powered through them because he could see how it helped him.
Over the last few years, we began talking of moving him into a supervised living arrangement. God made sure when the time was right it would be perfect… and it was - only 7 minutes from our home in Indiana. Over the last 3 years we had hired a live-in caregiver to stay in our home, but this winter he had his own place and independence.
Drew flew down to Florida to be with us for the Christmas holidays. With the pride of a seasoned traveler, he got off the plane by himself and I met him at the gate (it was a nonstop flight) to be embraced in a big hug and a bigger smile. We had a great weekend seeing friends and enjoying the Florida sunshine.
On Sunday, Drew and I got our booster shots (Moderna) then had lunch and off to last minute Christmas shopping errands. When we got home Jim and Drew went to hit some golf balls. On Monday, we both woke up with sore arms. I was feeling under the weather, but not Drew. He walked down to the pool twice, talked with me about a lot of different things, and used his word search book. When Jim got back from golfing, he and Drew went and hit some tennis balls. When they came back, we laughed and talked about the fun they had at the tennis courts and the people they met. We then decided to all take a quick nap before dinner. Less than an hour later we could not wake him…we started CPR and called 911...
SOOOO many questions……..and no answers.
What we know.:
- The preliminary autopsy --- organs were all healthy
- Nothing was out of the ordinary for him
- Medications the same
- Eating the same
- Energy the same
- Laughter and quick wit the same
The Medical Examiner office did more extensive tests especially since it was less than 48 hours post vaccine booster and his death was reported to the Vaccine Adverse Event Reporting System.
We are not questioning WHY did God call him up we just want to know how.
This Covid Pandemic has changed many lives. We all must make choices. We look at the facts with eyes wide open and the only change was the booster even though Drew did not have any kind of reaction to the first two. Do we feel the booster contributed to his death? YES!
Do we feel Drew died of Glut1 complications? NO! Just look at the ages of those diagnosed now… there are many older than Drew! SO LIFE EXPECTANCY SHOULD BE NORMAL.
The use of the brain bank should anyone find themselves in our position will continue to help all of us and has given us comfort knowing he will continue to help others.
Thanking all of you for your beautiful words, sharing of stories, and continued prayers for a CURE.
Last night Drew’s brothers played Euchre with two of their sons…we drifted off to sleep listening to laughter over a game of cards and thought...
DREW’S LOVE OF THE GAME continues……
-Jim and Pat Hemlock