Ashley Vacanti's Journal
CUPID'S RUN TO BENEFIT NF RESEARCH
Written Feb 3, 2014 4:02pmThe 4th worldwide Cupid's Undie Run is less than two weeks away, with many new US cities, and several new cities in Australia, banding together with one goal:
Fund research for Neurofibromatosis (NF) type 1, NF type 2, and Schwannomatosis!
Please join with us as we come together to ensure that our daughter, Ashley, and hundreds of thousands of people worldwide, can live their dreams without the symptoms of NF.
What is Neurofibromatosis, and Schwannomatosis?
They are genetic disorders and not diseases. There is a difference, as a disease is something you contract, and a disorder is something you are born with. Neurofibromatosis Type 1 occurs in 1 in every 3,000 live births, and is more prevalent than Cystic Fibrosis, Duchenne muscular dystrophy, Huntington's disease, and Tay-Sachs disease COMBINED. 50% of the time, NF is a mutation, meaning that any family, of any culture or race, can be affected by NF.
What are the symptoms of NF and Schwannomatosis?
Symptoms of these three related disorders vary greatly among those born with them, with a distinct difference between NF 1 and NF 2, as NF 2 produces vestibular tumors leading to deafness. All three disorders involve tumor growth, which can result in chronic pain.
How is Ashley affected by Neurofibromatosis Type 1?
Ashley lives with daily chronic pain from the tumors of NF 1. Because of NF 1, Ashley has also been diagnosed with scoliosis, adrenal insufficiency and brain tumor. Daily pain comes from the innumerable tumors in her spine, airway, shoulders, chest, both arms and legs. Because NF is PROGRESSIVE, and the tumors do not usually respond to chemotherapy or radiation, ongoing research is focusing on new and alternative treatments for these tumors.
How can you help? Please donate to the Children's Tumor Foundation through the Cupid's Undie Run, hopecur.com/teampage.asp?fundid=9443. You will also find the link above, under, 'My story'. Thank you so very much for your prayers, thoughts and donations, so that our beautiful daughter, and future generations, can be free of these disorders!
You CAN have it all!
Written Jan 23, 2014 2:50pmA big Seahawks hello to everyone! Super bowl fever has hit us hard here in the Puget sound area, and we are so excited to see our football team in the Super Bowl this year!
We are also very excited for the Cupid's Undie Run, February 15th, 2014, in Fremont, to benefit the excellent research and public awareness ongoing through the Children's Tumor Foundation!
Please click on the link in the 'my story' section above to donate to Ashley's team, 'Skivvies4Ashley'. 100% of your donation benefits the Children's Tumor Foundation, whose purpose and mission is to find a cure for Neurofibromatosis! That's what we need for Ashley, for 100,000 other amazing citizens of the US who live with the symptoms of NF. Our family is GRATEFUL for whatever you can give to the cause of ending NF.
Go cupids, go Seahawks!
Emergency room grace
Written Jan 15, 2014 10:25pmDear Family and friends,
For the past several days, Ashley has been experiencing abdominal pain and low grade fevers, and yesterday, she asked to go to the emergency room. The fact that Ashley asked to go was a red flag to us that things were just not right. We called Ashley's primary doctor, who wasn't in, so we took Ashley to Seattle, Harborview Medical Center. Harborview is a well known trauma center in the Northwest region, but it was our first time visiting their ER.
Things went fairly smoothly during check in and Ashley was given a 'room' within a few minutes of arriving. The 'rooms' are actually curtained areas, partitioned off, allowing everyone around you and beyond to know your particular story. No HEPA guidelines being observed there. As Ashley waited to be seen by the nurse, nurse practitioner, and finally, physician, she heard many other patients as they were in pain, being treated, and hurling obscenities at anyone who happened by their gurney. The staff at Harborview is incredible, because they take it mostly in stride, but I found my mouth hanging open more than once, I'm ashamed to say.
What was upsetting more than anything was Ashley having to wait twelve hours on the gurney, enduring more pain than usual, and test after test, only to be told around midnight that everything looked stable, nothing acute, and sending her home. In other words, the abdominal tumors are wreaking havoc, and there is nothing they can do other than what is already being done. That said, it was a relief, and a blessing, to hear that there was no burst appendix, pancreatitis, or some other serious problem. At the same time, it was heartbreaking for Dan and I to watch Ash go through all of that and not have relief. She deserves better, along with everyone else with NF that suffers everyday.
Having been to many emergency rooms in her young life, I don't know how Ashley can do it, over and over again. As we were putting her to bed at one o'clock this morning, she thanked us, thanked us for taking her there. It makes you want to punch NF in the face.
Thank you for listening, for loving Ashley, and for punching NF in the face with us!