NF Marathon Team Caring Run

Hello Teammates

The team now enters another fall season with marathon events almost every weekend. The growth of our scheduled events, the funds being raised for research, and the number of new runner’s we are signing-up is both exciting and gratifying. Yet, we are kept ever mindful that we are racing for a reason: to fund a cure for NF. 

Beyond fundraising, one key role that the team plays in supporting our friends and families suffering with the symptoms of NF, is in special circumstances, making known their medical and physical situation  - then completing a caring run on their behalf. We want all team members to know they are not alone in this battle. Please lace up your running shoes and plan for a 'caring run' this week in honor of two of our heroes listed below:

Bella and Rosie

Rosie Colucci, just three years old, was diagnosed with three brain tumors last month, and since then has undergone four surgeries at the Children’s Memorial Hospital, in Chicago. Her diagnosis came as a big blow and a shock to the family, but at the same time, a known possibility of the Neurofibromatosis (NF) diagnosis. There are two small tumors and one large tumor, all inoperable, and deep in the brain. The largest tumor has caused complications for Rosie by creating a condition called Hydrocephalus.  Hydrocephalus is an abnormal accumulation of cerebrospinal fluid (CSF) in the cavities of the brain.  Because this tumor is an optic nerve glioma (connected to the optical nerves of both eyes) removing it would cause blindness, so this is a very undesirable option.

During the surgeries a shunt was put into Rosie’s brain to permanently re-route CSF into the abdominal cavity where it will be absorbed, and to get an implanted venous device or "port" which can be used during chemotherapy, used to draw blood, and give IV fluids and medications. She is now very weak and has lost 17% of her body weight.  Rosie started chemotherapy on Thursday, September 27 and she will continue weekly for 12-16 months.

Rosie’s Mom, Jo says, “Your prayers, positive thoughts and constant concern have been a welcome blessing for Rosie, and for all of us during the past life-changing weeks. It is the people in our lives, like you, who make all the difference. We thank God for each and every one of you and feel so blessed to live and work with friends like you! We are also thankful for all of the talented nurses, doctors, specialists and staff at Children’s Memorial and feel we couldn't be in better hands or a better hospital.  We can never repay it all, but hope we can continue to pay it forward!”

Matt Leibowitz crossing the finish line at the
Virginia Beach Half Marathon 2007

On Wednesday, October 3rd, Matt Leibowitz, who has crossed the finish line of a number of marathons, has ankle/foot surgery.  If the ankle/foot surgery is not successful, eventually, he will need a wheelchair to ambulate. Amputation is a worse case scenario. After the surgery, there will be an external cage attached to his foot for 3 months, followed by a cast for a few weeks. The recovery, rehab, will be grueling, but as Matt says, “I am determined not to rely on a wheelchair and more determined to get back on the course and be with all of you at another marathon!”

After recovery from the ankle/foot surgery he will have a Thoroctomy at some point in 2008 to remove another large tumor in his chest. Matt’s particular form of NF 1 is very acute with numerous tumors growing along the spine making for risky operations and always painful movement. Yet he continues to inspire us all with his determination and love for kids with NF.

Whether we run, walk, ride, pray, meditate, or just sent positive vibes, these heroes and their families need our help and they need our support this week.  NF throws many unexpected obstacles into our lives . .  .some we can get around, some we have to live with, and some, require the caring support of an extended family.  Through this team we provide that sense of a national caring family - a sense that this path we are on, is not one we have to walk alone.  Perhaps during your next workouts you would pause and reflect on these lives, and the hope and courage they exemplify.

For the cause and our wonderful NF Families,

Bob Skold Jr.
Mighty NF Marathon Team - Colorado Office