I’ve received a lot of questions in these emails, and I thought I would answer some of them here (since more than one person asked some of these questions).
1. When will you know if it is type 2 or type 3? Unfortunately, Hannah has a mutation that hasn’t been seen or documented before (which wouldn’t surprise us being that her presentation is so unusual). After getting her skin cells examined, it has been determined that she likely is a type 2/type 3 hybrid.
2. Can I donate to help with Hannah’s uncovered medical expenses or send her a gift? We would welcome the help, as Hannah’s medical needs are quite extensive. We want to be able to give her all the equipment to enhance her quality of life, but unfortunately our insurance does not cover most of it. You can either donate via the paypal link on the right sidebar or you can send anything (donation, gift, or card) to:
Hannah Ostrea
c/o Carrie Ostrea
10624 S. Eastern Avenue, #A847
Henderson, NV 89052
3. I can’t afford to donate money, but I want to help. What can I do? Money isn’t the only thing we need. Just sharing Hannah’s story and video with your family, friends, coworkers, etc., is a huge help. Networking is HUGE in an effort like this, as we don’t have the budget to “advertise” or have a “celebrity” to front us. Hey, if you know a celebrity that is willing to do a quick PSA-type of video with us, please let me know! But spreading our story is so important — the person you connect us with may be the key to helping us save Hannah’s life! Also, if you have the time and really want to get involved, we could use the help in looking for media contacts and other outlets to get Hannah’s story out there.
4. What medications is Hannah on? Cerezyme (enzyme replacement therapy), Keppra (seizure control), Klonopin (movement disorder), Prevacid (reflux), Mylicon, Motrin, and Zyrtec. We took her off Haldol (movement disorder) late summer 2010 because it increased her seizures.
5. “Amazing mom,” “strong mom,” etc. Thank you for the support on that. But the truth is, if this was your child, you would probably do exactly what I am doing.
6. What keeps you motivated to do this for over 2 years? I don’t want my daughter to die. I also don’t want my two older children to have to watch her slowly deteriorate and die. We don’t have a choice but to do this.
7. Why doesn’t the Cerezyme work on the brain? Cerezyme only works on the physical symptoms (bone crises, enlarged spleen, enlarged liver, low platelets, etc.). It can’t pass through the blood-brain barrier, which is why it has no effect on the neurological symptoms.
8. Are you taking care of yourself? Honestly, not very well. I admit it. But I’m slowly getting into a new routine and part of that will include my wellness too. Have to take care of my family, you know how it is!
9. How many other Gaucher’s Disease type 2 and type 3 families have you been in contact with? In this whole vast internet, I’ve been able to get in contact with just a few dozen. That is how rare it is. But I’m constantly searching out other families!
10. What is the best way to contact you? Just click the ‘contact’ link above! I welcome all inquiries whether it is newly diagnosed families searching for information, media outlets looking to help create Gaucher awareness, or readers who have suggestions or ideas to help us either create awareness, deal with symptoms, or just want to say “hi” and get to know Hannah better.
Latest Comments