Mikaela Frances Jane

A website for our family and friends to keep up with Mikaela and her Arthrogryposis.
Also to help families find their way through this journey.

"Strength does not come from physical capacity. It comes from an indomitable will." - Gandhi

Gray Matter Heterotopia


Mikaela had a MRI done last week and today we received the results. They were concerned about her spine, which could be tethered keeping her from walking and standing, but good news is her spine is fine. The reason for Mikaela's delay in walking, standing and speech is because she has Grey Matter Heterotopia.

Gray matter heterotopia is a neurological disorder caused by clumps of grey matter being located in the wrong part of the brain. It is characterized as a type of cortical dysplasia. The neurons in heterotopia appear to be normal, except for their mislocation. The condition causes a variety of symptoms, but usually includes some degree of epilepsy or recurring seizures the second half of the first decade of their life, and often affects the brain's ability to function on higher levels. Symptoms range from nonexistent to profound; the condition is occasionally discovered by brain imaging performed for an unrelated problem and has no apparent ill effect on the patient.

In time, Mikaela should reach her goals with extensive therapy. They won't be able to give us a definitive answer on how delayed she will be until the age of 6. We will keep you up to date with her progress, as for now if you would like to read more about Gray Matter Heterotopia, click here.

Also, she has Ectopic Pituitary Tissue, meaning her pituitary gland has extra tissue surrounding it. The majority of patients with pituitary adenoma have excess hormone production, which could also contribute to Mikaela's size. We were told not to worry about there being any brain tumors. What we have to look for is seeing if the tissue that is surrounding Mikaela's pituitary gland is active tissue; if so she will need surgery to have it removed. Also, checking her hormone levels and getting the right medication to control that. As soon as we have more information, I will post it.