Tuesday, March 18, 2014

All Star Followup: Max Meierotto

Max and his parents first stayed at Family House for 3 months in 2011. They had come to San Francisco all the way from Vienna, Austria, so he could take part in a clinical trial for the treatment of Pelizaeus Merzbacher Disease, a very rare condition where the myelin sheath around Max’s brain deteriorates, causing significant motor function issues.

His mom, Stefanie, says of the clinical trial, “We were very, very happy about it, but of course we didn’t have a place to stay - and then Family House came in and gave us a bed.  There were very nice people to talk to and hang out with there. It was a place to just be home.”

Once a year for the next few years, Max returns to UCSF for checkups, including an EEG, an SSEP, an MRI, and all kinds of blood tests. “He’s 8 years old, and he’s having good progress with everything - it’s what we wish for.”

 When he comes to San Francisco now, he’s now longer the baby of the family. Stefanie recalls, “Last year in June, we had twin girls, healthy twin girls, and I’m not bored anymore. (Not that I was bored before, but now I learned what it means to be extremely busy!) They’re a big joy.

“In the beginning, it was a little bit hard for Max, because he was our prince for 8 years, and he had to learn to accept that there are other people that Mommy has to help with.  But he’s getting much, much better. Since the girls are getting older, and moving around more, he thinks this is hilarious, and enjoys them now quite a bit. It’s good for him - he’s learned a lot.”

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