Yvonne Jones

My name is Yvonne Jones and I live in Grand Forks, North Dakota with my husband Josh and our 2 year old son Nicholas. We have had quite an interesting year with Nick. He was growing in leaps and bounds, eating well, developing like a normal baby. About 6 months of age, our doctors became concerned with the size of his head and were taking notes with every visit. At a year of age, the testing began. Nick went through his first EEG and MRI and they both came back irregular. We were sent to the Minneapolis Children's Hospital for an MRI on a kid-size machine, and that also returned abnormal. A copy of the MRI's were sent to the Pediatric Neurologist at the Mayo Clinic in Rochester, MN. Our next step was genetic testing. We found out on November 26, 2009 that Nick has a form of brain disorder called a Leukodystrophy. There are over 40 known Leukodystrophies out there, and many more that are unknown as of yet. The form that Nick has is called Alexander Disease., which has been divided into three forms based on age of onset and type of symptoms: infantile, juvenile, and adult forms. All of the forms are rare, although adult onset Alexander Disease is the most rare of the group. The majority of all cases of Alexander Disease are caused by a defect in a specific gene called GFAP, which stands for Glial Fibrillary Acidic Protein. GFAP is an intermediate filament protein, which means that it is involved in the structural development of the cells. As of right now he cannot hold his head up very well, or sit up on his own. He takes Diazepam via a suppository twice a day because his muscles tend to stiffen up. He also attends Physical Therapy twice a week to help him strengthen his muscles.

It has been a rough road for us over the past year. We are so thankful that the Lord has blessed us with such wonderful family and friends. There are days when I want to just give up, say forget this, and walk away, as if this never happened. But then I look at Nicholas, his big brown eyes, his beautiful smile, and it melts my heart all over again. How can I ever give up on him? He didn’t ask for this to happen to him. All he wants is to be loved. Jesus chose us to be Nick’s parents because He knew that we could handle this task. People tell us that we are so strong, but it is hard to hear, or even believe at times. I do not think I am strong. I am the weakest person that I know. If anyone is strong, it is Nicholas. He has been through more in his first year of life than most adults. He is truly my hero. Whether I am strong or weak, I know one thing. I am his mom, and that’s the greatest gift that the Lord could ever give me.