On September 19th our family will once again participate with 100's of others at the Lagoon Valley Trail Run/Walk for Tuberous Sclerosis in Vacaville, Ca. As most of you know, our 13 year old son Ryder was born with this disease and will be fighting it the rest of his life. We are asking you to consider making a donation to Team Ryder this year. We are so excited because this year all funds raised will go to the Tuberous Sclerosis Clinic at Children's Hospital Oakland (CHO), where Ryder sees all of his specialists. Bill and I have a really difficult time asking for money in these tough economic times but Ryder's quality of life battling Tuberous Sclerosis by having access to CHO specialists is why we do it.

 We want to raise awareness and funds for the TSC Clinic and Tuberous Sclerosis Complex (TSC), a genetic disorder. TSC affects 1 in 6,000 and causes tumor growth in major organs and associated medical complications, from mild to severe. It is a leading genetic cause of epilepsy and autism. TSC can cause mental retardation, developmental and behavioral disorders, and a multitude of associated medical conditions. There is no cure. Research is making progress, and can be applied to all the medical conditions associated with TSC.

The Jack and Julia TSC Clinic at Oakland Children’s Hospital understands that the medical and development concerns of individuals with TSC are unique and therefore require specialized care. At this clinic and hospital, Ryder can get his yearly MRI scans on his brain and kidneys done, he can see his neurologist, neurosurgeon, nephrologist and cardiologist all in the same location. And, they all know this disease and how symptoms and manifestations can be treated. 

Update on Ryder's Health

Overall, Ryder is really doing well. As many of you know, seizures are a big problem in our lives. But, he hasn't been in the ER with a seizure since February 4 (knock on wood, its been 6 months!). The last year was tough with a major seizure just about every other month landing him in the ER (and missing not only his birthday party but our annual pumpkin carving party too). Seizures have no sense of timing:). Ryder has his full checkup each May and we always hope to have news that no new tumors are growing back and he's stable for another year. This year we were told several new issues have developed:

•  Due to the tumors and cysts on Ryder's kidneys, his blood pressure is a  little  high, so he now takes Enalapril daily to control this.
• Another brain tumor is growing. This tumor is on the other side of his brain from the last one he had surgery on when he was 8 years old. The tumor is growing into the ventricle (where cerebral spinal fluid accumulates) and into the brain in an area that affects motor skills in arms and legs.
•  He needed to be genetically tested for Polycystic Kidney Disease (PKD) because individuals with T.S. sometimes also have PKD due to kidney involvement. He had the test done and we had to wait for almost 8 weeks for the results. That was such a long, long eight weeks because PKD is ugly and eventually your kidneys fail. The results were really good. According to his nephrologist, he does have a strange mutation in his DNA which means he has 5% chance of getting PKD but it also means a 95% chance of not having PKD. This is great news! They will keep the data for future comparisons if scientists find that that 5% chance relates to Ryder's version of T.S.

So where are we with this obnoxious disease??????? Ryder is now on two medications for seizure control - Depakote and Lamictal. He takes the Enalapril for blood pressure. Sometimes I think I'm becoming a pharmacist and sadly, they know me by my first name at the Walgreen's drive through. As for the brain tumor, his neurosurgeon wants him back September 24th for another MRI to see what its doing. In the meantime if Ryder exhibits signs like unexplained nausea/vomiting, unsteady on his feet or headaches, he needs to see his surgeon right away. He did say if he does surgery, because of the tumor's location, he can go straight through the top of his brain where we all have that natural crevice and disturb less of it. We'll certainly know more after September.

School

Ryder is entering 7th grade and will be in the SDC (Special Day Class) at Willowside Middle School for the next two years. We feel so lucky to have this placement for him. He's reading now at about a 4th/5th grade level with comprehension a couple grades lower. This is a huge improvement and I give all the credit to his amazing teacher last year, Paula Philbrick. Math is another issue. He did progress last year to multiple digit addition and subtraction. I think math will always be addition and subtraction yet we will continue to work hard advancing. I have to say that Ryder's new seizure medication has made him a lot more tired and a bit fuzzy in these areas so we have to balance out maintaining seizure control with the desire for more progress in school. Right now our vote is for seizure control.

The Young Man Ryder Is

As you can see this disease is not only a medical nightmare but developmentally too. Ryder will never drive a car, will probably never live alone and will be seeing doctors his whole life. BUT, Ryder loves to play basketball and bowl in the Special Olympics, loves playing Challenger Little League, loves movies (his current favorite is Aladdin which he bought at a garage sale for $2), loves riding his quad and continues to be the wonderful blessing who came into our lives 13 years ago. He delights us when we catch him watching the same Disney movie over and over, still laughing at the parts he's seen 1000 times and is still surprised when the villian loses.

We are asking you to look into your heart and consider a donation to our fundraiser. It doesn't matter how big or small it is because they all add up. Please contact us through e-mail at Schalich5@sbcglobal.net or 546-3645 if you have any questions, want to help us fundraise or walk/run with us that day.

Bill, Cindy, Kasey and Ryder Schalich  - Go Team Schalich!