As you know from our periodic updates, Leah’s team of doctors has been keeping a close eye on the tumor in her airway. This tumor is just above her vocal cords and does partially obstruct her airway and breathing, so she needs to use a CPAP machine while sleeping. Given the size and location of the airway tumor, the surgeon in Boston recommended slowly debulking the tumor instead of going in and removing it all at once.
Leah underwent her first procedure to debulk the airway tumor in August of 2015. Although the surgery went well, she still needed to remain on the CPAP machine. Last summer we had hoped to complete another step in debulking her airway tumor, however, the removal of her vestibular schwannoma (VS) hearing tumor was a higher priority. Now that things have settled down from that surgery, we are heading to Boston Children’s Hospital on April 26th for another round of airway tumor debulking, with the hopes that Leah can be taken off the CPAP machine, which as you can imagine, would be huge for a teenager!
This will be Leah’s 13th major surgery in 9 years. Please keep Leah in your thoughts and prayers!!
Finally, our 10th year of fundraising for NF2 research is well underway. However, having just returned from Capitol Hill, we know many research programs are facing scrutiny and funding for the National Institutes of Health (NIH) could be slashed under the newly proposed budget. Independent fundraising efforts such as ours, is more critical than ever. Your help in reaching our $50,000 goal in 2017 is greatly appreciated - Thanks you to all of you who have already made a donation!
To show your support and make a donation, please use the information below:
By Check: Please make checks payable to NF Northeast and note “Manth/Run4Leah” in the memo line. Please mail checks to Run4Leah c/o Dave Manth 2922 Walk Drive, North Tonawanda, NY 14120.
Online Donations: www.firstgiving.com/fundraiser/run4leah/2017
Please keep Leah in your thoughts and prayers