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Saturday we returned from the GLUT-1 Conference in Louisville. We were happy to hear some very encouraging news regarding the ongoing research and study of GLUT-1 DS. Dr. Pascual (one of the main doctors heading the research Dallas Southwestern Hospital) said this is "fundamentall solvable. We just have to figure out how." Dr. Roe, a colleague, spoke of the upcoming treatment being developed which is known as C7 oil (triheptanoin) which could allow our children a normal diet. Clinical trials will start soon then they will move onto FDA approval. They're hoping for this to become available to our children within two years. (needing FDA approval, I find this highly doubtful but I'm hopeful) This oil and the chemistry behind how it could work was explained as it helping to fill a missing link in the cycle of energy production for the brain. Brooke would take 4 doses daily and be able to enjoy a normal diet. Calorie restrictions would be the same as for any growing child.
Several of the Doctors also spoke of the possibility of the number of undiagnosed potential cases of GLUT-1 being in the thousands! There are now only about 150. So please, if you know of a family struggling with an undiagnosed developmental delay, please research GLUT-1 and see if the symptoms compare. Many children with Cerebral Palsy and epileptic symptoms are going undiagnosed. There is treatment with the Ketogenic Diet and a team of Doctors working on even better treatment. Our next mission is to get to Dallas to see Dr. Pascual. They need our children to accurately move forward in their research and of course, we need their expertise on GLUT-1 to be certain we are doing all we can for Brooke. |
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Posted by Vicki Barels at
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| Happy New Year to all. It's been awhile since I've updated Brooke's blog, we've been busy, busy, busy. Brooke is doing well, continues to enjoy school and is excited about all she is learning. She has begun a new reading program at school! She attends the East Troy Middle School, is in the 6th grade. Her mornings consist of a life skills class at the High School which she also enjoys. We have a dedicated staff who encourage her independence. She is completely independent in many self help areas which makes us all very happy and herself very proud. Persistence has paid off for her in so many areas. We are looking forward to starting, again, therapeutic horseback riding in the spring. It's been awhile since she's ridden so we're excited to see her enjoy this again. Hope the new year finds everyone counting many blessings. |
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Posted by Vicki Barels at
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| CARS , CARS, AND MORE CARS! Wow, what an awesome car show hosted by the Tichigan Lake Lions Club. With about 500 cars registered in the car show, everyone enjoyed a sun filled, fun filled day complete with food, beer, soda, a play area for kids, DJ with great music, and so many beautiful cars, modern, classic and everything in between. Our thanks to the Lions Club for choosing Brooke to be the recipient of funds raised on the 350 Chevy Engine raffle. We got to hear it fire up every so often, ticket sales were great! The money raised will be used for hippotherapy, making the yard more accessible, as well as possibly an appointment with one of Dr. DeVivo's colleauges, whose mission is to find a cure for GLUT-1 by 2019. Our thanks goes also to those who came out to show their cars, support the raffle, and just coming out to enjoy the beautiful day. If you were unable to come, I recommend going next year. It was the biggest car show in our area. Amazing! Family and friends came through once again, showing their love and support. Brooke put on several miles in her walker, going round and round, and up and down that huge hill. Nothing slows her down! She drew the winning ticket at the close of the car show and accepted the check from the Tichigan Lake Lions Club. |
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Posted by Vicki Barels at
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What a great visit we had with the Stovers from Alabama. They loved Wisconsin and decided they could live here if it wasn't for the cold and snow. After a few days here, we went to the first ever GLUT-1 Conference in Hoffman Estates. We were lucky it was so close to home. GLUT-1 families from all over the world came for this. Our Doctors and research team from New York spoke, we were able to meet many other GLUT-1 families, share stories and recipes, it was quite a gathering. Brooke and Brady enjoyed a fun filled day while Ed and I attended the Conference.
August 3rd Miss Brooke had her 12th Birthday. She was SO excited for her Birthday, we had a nice party with family and friends, thank you all for the gifts chosen especially for Brooke. Looks like another year of "best dressed"!
JOIN US FOR SOME FUN on Sunday, August 30th . The Tichigan Lake Lions are hosting their Car Show. Location is Hwy. 164 & Jensen, in Tichigan. 9am - 4pm with DJ Don Kasper at Noon, RUPENA'S Pork Chop Sandwiches, beverages, craft fair, and 3pm trophies and awards. There is an exciting raffle the day of the car show. They are raffling a 350 CHEVY ENGINE (valued at $3,500.00) or if you choose, you may opt for the $1,000.00 CASH! The Tichigan Lions have offered the proceeds from the raffle to benefit Miss Brooke. As many of you know, there are various therapy opportunities we provide Brooke to increase her independence, confidence, and overall quality of life. We are considering introducing Hippotherapy again (horseback riding...which she LOVES), and now we are doing Hyperbaric Oxygen Therapy, as recommended 2 months post stem cells. Thank you A&M Hyperbarics for Hope for making this possible! Raffle tickets can be purchased from any family member, they are $5 each, or 3 for $10. We appreciate your support, hope you can join us that day, and as always, thank you for your many prayers. Our blessings are endless. Look for the "red shirts" at the Car Show! |
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Posted by Vicki Barels at
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| This weekend seemed so far off and now it's nearly upon us. Our friends from Alabama are on their way to Wisconsin, due to arrive at 7pm tonight! The Stovers, (daughter Jordan, dx GLUT-1) will be staying in Wisconsin tonight and tomorrow night, prior to heading to Chicago with us for the first ever, GLUT-1 Conference. There are families coming from all over the globe whose children share Brooke and Jordan's rare diagnosis. How exciting it will be to meet families, share stories and keto recipes, as well as hear Dr. DeVivo, (Mr. Glut-1 Himself!!), and his research team and keto nutritionists speak. We are hoping this will become an annual event. God watch over our traveling families! |
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Posted by Vicki Barels at
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Every girl's two favorites? We found in the last 4 days, Brooke LOVES both! She attended her first concert, featuring the Jonas Brothers. Never in your life will you witness more screaming teenage girls! The environment was as loud as the concert, but Brooke loved it! Our seats at the Bradley Center were in the Cambria Club, so we had full service food and soda. There were enough selections within Brooke's diet guidelines for her to enjoy it. The tickets had been donated to the Make A Wish Foundation, and were offered to Brooke.
Yesterday we attended the Brewers Game. We helped the MakeAWish Foundation celebrate their 25th year of granting wishes. What an event. There were 2200 fans there in support of the Foundation. We had 11 of the 2200 in attendance: Brooke, Brady, Shar, Cindy, Chuck, Mike, Kelsey, Josh, Robert, Denise, and myself. Ed was sorry he missed it, but had prior plans to attend the Nascar race at Chicagoland Motor Speedway. Lots of fun had by all!
Hope everyone is having a fun-filled summer and enjoying all of God's blessings!
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Posted by Vicki Barels at
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Brooke and I are happy to report we are home! We left Shanghai 4pm local time and arrived 4:20 local Chicago time. The flight went well, Brooke did fine. It seemed faster coming home than going, she did sleep about 2 hours total. It was so nice to see Ed and Brady waiting at the airport with "Welcome Back" balloons for the girls. We ate at Cracker Barrel on the way home, (thanks again Roy & Nancy!). It will be interesting to see how long Brooke sleeps in this morning, course it's 4am and I'm up. Although, hopefully not for the day. I came home to a clean house, yes! Laundry and bills will be on my agenda the next couple days as well as getting back on USA time. Then back to work and school next week, and we pray for many upcoming improvements for Brooke, and for Rachael and all those special children we met while in China. The love and dedication you see in these families is remarkable. If any of you are keeping up with Brooke's blog, we are praying for success for all of you. We will keep in touch.
Thank you again, all you supporters out there, it's comforting to know you care.
Edit: Adding some pics...
  
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Posted by Vicki Barels at
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We are so happy to report the last treatment is completed! Dr. Mike did the last of 4 stem cell injections today. Brooke is doing fine. It is 2 hours post and she is just starting to ask to eat, so I'll give her a little something to hold her over until she can eat more with no nauseous effects.
As thankful as we are to have this opportunity to receive stem cells that are safe and hold no ethical issues, we are so happy to say we are leaving in 2 days! Thank you again, to all of you who care for Miss Brooke and have shown us just how much by helping make these treatments possible.
We look forward to seeing everyone SOON.
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Posted by Vicki Barels at
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Happy to report we're down to one week left. Brooke has her last spinal on Monday, May 4th, and we leave Wednesday, May 6th. I hope the weather has improved at home. It has been pretty warm here these first 2 weeks. We went to the Grand Century Hotel yesterday to the 41st floor and took some pictures. It was pretty neat. Something different to do and see. We went to a large mall downtown yesterday also, you would need a whole day to see it all, many levels, lots of stores. Didn't buy anything, just walked around.
Brooke did better with her 2nd spinal. She was doing well the next day already so I'm hopeful for this last one, as we'll be coming home after. That sounds good, we miss everyone and are looking forward to next week! |
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Posted by Vicki Barels at
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