tiffany2ATiffany symptoms started early but she was not diagnosed with mitochondrial disease until she was ten years old, after a long history of many doctors, misdiagnoses and difficulty with growth and weight gain. She has had difficulties with severe allergies and digestive issues requiring a g-tube for all her hydration and nutrition.

Tiffany is wonderful 13 year old old girl who loves being outdoors and spending time with her dogs. This year is going to bring many changes for her. After being homeschooled most of her life, she is going to start attending the local middle school for 2hrs a day. This is a HUGE thing for her and is going to take a lot of inner strength but she is up for the challenge and will give it her best effort.

She spent the summer exploring Yellowstone National Park and a few of Washington’s State Parks. Sometimes all she would have just enough energy for a 10 minute walk but she enjoyed every minute of it.

She also spent a week at Camp Korey. She really enjoyed being with kids her age dealing with similar issues. She is so amazed by how the counselors will do anything for the kids, even where face paint & wacky hair!

This year has presented a lot of challenges for Tiffany.   She has really struggled with her energy, autonomic issues and intolerance of the heat. We think her autonomic issues have caused her blood pressure to be unstable. Since the mitochondrial disease has affected her GI tract and caused her to not be able to tolerate simple things like sugar or pedialyte or even to increase her fluid intake. She really struggles to gain any control over this. She and her dog spent a lot of time in bed resting.

She also struggled more with school and memory. The educational testing through the school showed significant loss of skills, enough that she now qualifies for special education. We are hoping by enrolling her in school they will have the tools needed to assist her with her goals. She would love to go to college and study science.

If you ask Tiffany what the best thing about this past year has been it is the fact she was able to start a drug called Xolair. This is a drug used for asthma but also for those who, like Tiffany, produce antibodies against their own body tissues. It has changed her whole world. Without it, she would not be able to even consider going into a regular school again. More importantly, it has helped her gain control over her allergies and be able to enjoy the outdoors she loves! She no longer has to fear an asthma attack from sniffing a flower or hives from touching it. She has also gained some control over her intense migraines that increased again this year. We are thankful for any relief from her constant pain.

Tiffany is such a strong person. Every time she gets a curve ball thrown at her she just bounces back. Despite everything medically she deals with she doesn’t complain and is thankful for where she is today and is able to count her blessings.

We’ve been very blessed on our long journey. We found Dr. Saneto, a KNOWN mitochondrial specialist, in our own back yard! We finally got an ER letter that said what to do when she was sick. My hope is for doctors to be better educated about mitochondrial disease, the many ways it can present in people, and to be able to find new ways to make life better for them.

Bob and Laura Griffey

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