Good News!

Today I received an email from Governor Doyle's office with the Proclamation that he signed declaring February 28th "Rare Disease Day"! I was so excited! Hopefully we will raise enough awareness in the years to come, so other children won't have to suffer as long and hard as Jymani and the other OMS children in the world!

Rare Disease Day!

Wisconsin has not yet declared February 28th "Rare Disease Day", so today I emailed our governor and this is what I wrote:
Hi my name is Lisa Evans, I have spent countless days since September 16 2006 searching for answers to my son's rare disease called Opsoclonus Myoclonus Syndrome (OMS). I need you to understand that my son is my hero, the things he has had to endure for more than half of his life now is truly heartbreaking. Tonight, I became aware of "Rare Disease Day" which is recognized on Feb. 28th in about 19 states so far. Unfortunately, WI has not yet declared Feb 28th as Rare Disease Day. I feel that it is very important to be able to spread the word on rare diseases as this would truly help children be correctly diagnosed sooner making prognosis possibly more positive. My son Jymani went misdiagnosed for 3 months and by the time he was diagnosed correctly, he was in the severe stages of OMS, making treatments less effective and brain damage more likely to be irreversible. I know my email alone may not make a difference, but I am hoping I am not the only one contacting you in regards to Rare Disease Day. I am not a Rare Disease Partner, I am just a mother devoted to raising awareness and hopefully finding a cure so another child will not have to suffer like my son has. Thank you for your time.

....another day of twists and turns!!

Well,today we went to the hospital expecting to start our third round of chemotherapy! We checked into the clinic as scheduled and had all necessary lab work done. Thank God the nurses had not yet accessed Jymani's port, because the Chemo was canceled due to the fact that Jymani had another bed seizure last night! I kind of figured that would happen as I called the hospital late last night to speak to the Oncologist on call and the Neurologist on call. Its so hard when there are so many doctors with their hands in on his care, I just don't know who to talk to! Nonetheless, the Oncologist on call told me to come in and the Neurologist told me to call his actual Neurologist in the morning. Well, that was little help because we were do to be at the hospital at 8 AM and we have about an hour and a half drive! So we went knowing that the docs would want to see him anyway, because his seizures have been so uncontrolled! Dr. Joseph ordered another EEG instead and also raised his Topamax (again). So we checked into Neurology by 9:15 and were done by noon. So it wasn't too hard of a day for Jymani, although he HATES, when they glue all the wires to his head. He just cried and said, "No mommy, I'm a good boy!" Talk about breaking my heart!! I am anxiously waiting for the results.........