Miracle Flights for Kids

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. 

Humbled by So Much Love and Kindness

Since Ricki's diagnosis of NF2 we have been blessed by so many by their love and support and are humbled by the continued support...A few days ago some sweet friends from work came to me and asked if they could do something very sweet for Ricki. They wanted to raise enough money for us to get Ricki to Disneyland during Spring Break.  I was so touched by their kindness and so many thoughts rushed through my head. ..How can you turn down someone who wants to do something nice? I knew however how much it would mean to Ricki and how good it would be for her. I swallowed my pride and agreed to this generous act of kindness. . I went home that day to tell Ricki but she was having a migraine and just wanted me to hold her and to be close. The next day when I got home from work she was doing better so I told her I wanted to show her something. I pulled up the GoFundMe page that my sweet friend Robin Cooper had put together.  When Ricki saw the title she just started to cry and was so excited....then we both cried even more as we saw the generous donations from those we loved and from those we didn't even know. It has been so humbling to have such an outpouring of love and support. This morning before I left for work she was excited at the thoughts of planning what she was going to wear to Disneyland. It has brought a light to her eyes and something fun to look forward to. Thank You.