Dear Governor Brown,
I wasn’t able to write last week; I hope you didn’t think that I forgot about you – or about the need to repair the developmental service system.
Interestingly, I did hear from you, the first time I’ve received any correspondence from your office since I began sending you weekly letters in April. I was a little confused about why you sent me a message about climate change, since I’ve only written to you about one issue – DD funding – but I suppose I should be grateful to be included on your mailing list.
In another week, the special sessions will resume and our legislators will continue looking for funds to restore the cuts – more than a billion dollars since the great recession – that the developmental service system has sustained. I think the committee members truly understand the desperate need to stop the collapse of this system, and I am very hopeful that real solutions will be found.
Valerie and I plan to be in Sacramento to provide our perspective. We’ll be sure to stop by and stay hello.
VALERIE’S WEEK IN REVIEW
Friday, August 7, 2015
Valerie has been having seizures, despite being on two different seizure medications. There have been several worrisome episodes recently, and we were finally able to have an appointment with her neurologist last week. The outcome of our consultation was an increase in one of her medications, and now we’re dealing with the extra sleepiness and confusion that invariably follow raising dosages. The expectation is that these side effects will diminish over the next few weeks, but for now Val’s daily schedule has to be adjusted around her dramatic lack of energy.
Since it’s impossible to predict how this will look on a day-to-day basis, we keep our options as open as possible and all plans must be flexible. Some days Val can’t be awakened until two or three hours after her normal time; other days she runs out of steam and needs a nap after just a few hours of light activity.
Actually, we have it pretty easy. Seizures are common in Rett Syndrome, Valerie’s disability, and they are often difficult to control.
Rett syndrome, often misdiagnosed as autism, cerebral palsy, or non-specific developmental delay, is a unique postnatal neurological disorder that is first recognized in infancy and seen almost always in girls.
Rett syndrome is caused by mutations on the X chromosome, on a gene called MECP2. It occurs worldwide in 1 of every 10,000 female births.
Rett syndrome causes problems in brain function that are responsible for cognitive, sensory, emotional, motor, and autonomic function. These can include learning, speech, mood, movement, breathing, cardiac function, and even chewing, swallowing, and digestion.
There have been amazing scientific advances since Valerie was born; at that time there was no test, and we didn’t have a definite diagnosis until Val was in her teens. Today, we have genetic testing, clinical trials on promising drugs, and ongoing research all over the world.
Please visit http://www.rettsyndrome.org to learn more about this disorder and the enormous amount of help available for families facing life with Rett Syndrome.
Rett syndrome presents many challenges, but with love, therapy, and assistance, those with the syndrome can benefit from school and community activities well into middle age and beyond. They experience a full range of emotions and show their engaging personalities as they take part in social, educational, and recreational activities at home and in the community.