This week I was able to attend a meeting with some other mothers of children with Neurofibromatosis. Their children all have NF1 but have similar heartaches and struggles. As I was visiting with Our NF chapter president I was telling her I would really like to attend the Arizona conference. She ask if I had heard of Miracle flights for kids. They help children get airline flights to doctors and conferences so they are able to get the medical help they need. I had been hoping to attend but would need to make the 12 hour drive to get there. If the Miracle flights work out it will take so much of the stress and worry out of going.
I was also looking on the list of Doctors that will be there at the conference and was excited to find that Dr. Plotkin from the NF clinic at Mass General worked with 121 NF2 patients this past year. Throughout most of the NF clinics in the US the clinics have 0-2 NF2 patients. I absolutely love our doctors at Primary Children's Hospital but it would be so nice to have someone with more experience give us a second opinion on Ricki's medical condition.
We continue to hope for miracles and for cures to end NF, but for now getting to this conference could be our own little miracle.
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