|Halle with big brother, Anders|
Each cell in our bodies contains multiple mitochondria, which are the “energy producers” or “powerhouse” for everything we do. When an individual has a mitochondrial disease, it means they do not produce enough energy for their bodies to function fully, and often the brain and muscles, which require a tremendous amount of energy, are most affected. Now at 20 months, Halle is not quite at a four-month-old’s level of development. She has poor muscle strength and tone, vision and hearing limitations, seizure activity, and sleeps a lot due to low energy. Moving much is tiring for her, and so is making sounds. She also has a suppressed immune system and gets very tired when she is under the weather. However, even with all her challenges and many pessimistic prognoses, we continue to have hope, and everything is made easier by the fact that she is a snuggly, sweet, lovable human being. Halle recently rolled over for the first time, and her vision continues to show signs of improvement. Halle receives four therapies per week, a litany of supplements to maximize her energy production, and doctors continue to work to develop new medicines and treatments. Even now there is a drug trial underway which we hope to soon be a part of.
We have made it through the past 18 months thanks to an incredible support system of family, friends, our CaringBridge community, and a whole team of wonderful doctors, nurses, caretakers and therapists who love her dearly. When we have been disheartened, others hopes have kept us lifted. The countless prayers lifted and good thoughts spoken for Halle have supported us and encouraged us. We could never have made it this year without the shoulders of others.
The costs associated with Halle are many – she has to drink a special, expensive formula since eating is a challenge. She takes many over-the-counter supplements including large amounts of co-enzyme Q10, which help her produce the most energy possible. In addition to that, she takes multiple medicines, and sometimes requires additional therapies than those that are covered. Also, Halle recently began hyperbaric oxygen therapy, which is not a traditional treatment for mito, however many families are seeing benefits from it. We have rented an oxygen chamber and she goes inside for one hour per day. We are thrilled with the changes we have seen in just one month. Halle has more energy and is moving more and eating more. It is our hope to buy the oxygen chamber, which is very expensive.
Any funds raised through this event will go to all of the above. We are so grateful to the Bumblebee Fund for this incredible opportunity to help support Halle.
The money raised will go directly to helping Halle's family. Thank you in advance for your support!