Kalvin is now a 8 year old boy. Since he was diognosed over 5 years ago it's been a long bumpy road. As a mother I've always had the feeling it was something more but no hemotoligist wanted to believe me. We just started seeing our 4th hemotoligist last year and we couldn't be happier. She has listened to my concerns and tested him for a bunch of other things it could be. As of June we got news we've been waiting to hear for 5 years. It was in fact something more. Kalvin not only has low platelets or also known as thrombocytopenia but hearing loss as well. With putting the two together his hemotoligist did a genetic test. The genetic test came back positive. Kalvin has myh9.
There are only approximately 200 known cases of this genetic mutation. Every case is different. Myh9 affects kidneys, vision (could cause cataracts later in life), hearing, and low platelets (thrombocytopenia). So far he has two symptoms of myh9. He is seeing a hemotoligist, nephrologist, audiologist, neurologist, and rheumatologist all at Lucile Packard Children's Hospital. The hospital is a 400 mile round trip from our home. This is a 3.5-4 hour drive. Sometimes the latest appointments available are 10. This means we need to leave around 5am, packing not only Kalvin but his 4 year old brother in the car. Not only are his medical bills stacking up but our car has taken a toll.
We've been traveling once a month, some months two times in one month. We dont like asking for help but we really could use some! It's sometimes easier to stay the night before in a hotel because early appointments or simply being worn out. Hotels can get expensive in Palo Alto. We also like to be able to take him to do something fun after his appointments. Even simple things like getting garlic fries in San Francisco (Kalvin LOVES SF because of his love for the show Full House).
Our next trip is August 1st and we're hoping to take him to San Francisco zoo.
Kalvin loves going on adventures and spending time with his Mom, Dad, little brother Paul, and other family members, when Dad is unable to travel due to work.
Thank you for reading about Kalvin's story! If you have any questions please feel free to contact me! ♡
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