Mission
Faith Autumn Tremblay, who is 5 years old was diagnosed on 6/21/05 with a rare brain disorder called Periventricular Heterotopia. If you have never heard of this that is because it is very rare. This disorder can only be detected through an MRI, and will not show up til the child is over 18 months of age. It is a particular abnormality in the way that the brain developed during pregnancy. Dr. Christopher Walsh has the only lab researching her condition in the United States, which is based out of Boston. A child diagnosed with this condition can have some learning disabilities. All will have seizures. They can also have problems outside of the brain, such as in the heart or blood vessels, either by a blood clotting disorder or aneurysms in the aorta. The risk of a stroke also increases. PNH is usually lethal in males; most will not make it to 5 months of age.
We are keeping our fingers crossed, Faith has been relatively healthy the last two months, and it is a welcoming break after the months of January & February. After extensive tests in school Faith has been identified with a movement sensory, and is struggling with lower arm strength, not using adjectives, mirroring images, etc. We have lots of doctor apts scheduled for the upcoming summer. Most are annual visits and tests. Faith will be having a new neurologist as of June, our friend, Dr. Brunquell, has retired.
FAITH FOUNDATION ANNOUNCEMENT- As of August 2008 the Faith Foundation will hopefully be helping children and their parents in Connecticut with funds for life saving prescriptions & gas cards for apts/hospital stays. More information coming soon!!
And Faith Autumn's
journey continues....
Faith Foundation