Seattle to Portland Bike Ride with a Purpose

This is from one of my wife's former managers. Please read and share with others that you know. I understand that money is tight right now for most of us, but if you could just find an extra $5 or $10 that would go along ways towards understanding this terrible disease.

No disguising it: this a charity plea.

My wife, Kirstin, and I are using the 204 mile Seattle to Portland bike ride as an opportunity to draw attention to and raise funds for the Children’s Tumor Foundation, a charity close to our heart given our son’s condition. Please feel no obligation to do anything with it just because you know me. I know people are tightening belts due to the state of the economy and I know you all are generous givers to charities close to your heart. With that said…. Any donation will be much appreciated..

As many of you are aware our six year old son Hayden was diagnosed with Neurofibromatosis 1 (NF1) when he was two years old. The month of May is NF awareness month and we are hoping to increase people’s knowledge about this disease and to raise money to support research that will ultimately benefit Hayden and about two million other children around the world. Donations can be made on our fund-raising Web site.

Neurofibromatosis 1 (NF1) is a common but under-recognized disorder that affects 1 in every 3,000 children. It is characterized by the production of faulty tumor suppressing genes throughout the child’s body (for example, every cell in Hayden’s body contains a faulty tumor suppressing gene) making them prone to the formation of tumors anywhere in their body. The disorder is also characterized by a host of other potential medical complications, such as bone and skeletal deformities, learning and behavioral disabilities (50 to 60%), hypertension (high blood pressure), migraine syndrome, early or late onset of puberty, scoliosis of the spine (curvature of the spine), cardiovascular defects leading to an increased potential for aneurysms (thinning of blood vessels) and strokes, brain and spinal tumors, 200-fold increased chance of juvenile myelomonocytic leukemia, mental retardation, fine and gross motor deficits, cancer, epilepsy (seizure disorder), pruritis (itching of the skin) and malignant brain, nerve and spinal cord tumors. One of the most common symptoms associated with NF1 is the formation of neurofibromas, which are benign (non cancerous) tumors that form on the nerve cells close to or under the skin’s surface. The number of neurofibromas tends to increase during puberty and pregnancy suggesting that there may be a hormonal link to NF1. Plexiform neurofibromas are also a common tumor associated with NF1. They are more diffuse and occur deeper in the body. These tumors may grow significantly causing disfigurement and are hard to remove because they occur on the nerve cells. They may also increase in size and start to push on internal organs causing significant problems. Neurological impairment is the risk of trying to surgically remove them and there is the potential that they may become malignant (approx. 10% do).

Unfortunately, Hayden was recently diagnosed with a plexiform neurofibroma on his shoulder that causes him a great deal of discomfort. Hayden has many of the numerous afflictions associated with a diagnosis of NF. This disease affects Hayden everyday of his life and will do so for the rest of his life. For example, Hayden suffers from a generalized weakness throughout his body, which prevents Hayden from being able to partake in the normal sports activities that his peers enjoy. He has never successfully ridden a bicycle because he has no lower body strength and still cannot successfully catch a ball or dress himself independently because he cannot do zippers and buttons etc. He is also unable to walk for more than a block or so because of fatigue, dizziness and pain in his extremities and he finds it very hard to sit up straight for even short periods due to lack of core strength. He suffers from puritis and literally scratches himself until he bleeds in his sleep. Hayden also struggles at school, due to poor fine motor skills he is unable to grip a pencil or pen effectively so his writing is illegible, he struggles with reading and becomes very frustrated whilst doing many academic exercises because although he understands them cognitively he is unable to write the answers down quickly like the other children and thus rarely completes his work. Imagine how awful it would be to be trapped in a body that “doesn’t work like everyone else’s” but your mind does. Understandably the aforementioned is slowly starting to affect his self esteem and confidence. Plus the other children are starting to realize Hayden is different and have started to tease Hayden about his tripping over and lack of co-ordination and dexterity which is starting to affect his psychological well-being. This is only going to get worse as he gets older.

One of the biggest challenges so far for Hayden and us as a family has been the diagnosis of three brain tumors - for which Hayden has been on chemotherapy every Friday for 16 months so far. As the months have gone by Hayden has been more and more affected by the effects of the tumors in his brain and the side effects of the chemotherapy. The effects are so devastating as those of you who knew Hayden pre-chemo are aware. Hayden has the potential to lose his eyesight because of an optic nerve tumor (his eyesight is gradually deteriorating), become paralyzed due to his brain stem tumor and have little control over his balance and movement due to a cerebellum tumor. This is Hayden’s reality and on top of this he suffers a whole host of debilitating side effects from the chemotherapy that put him at risk of life threatening illnesses, make him feel sick, left him malnourished and very underweight, caused incontinence, given him mouth ulcers, made him anemic and leave him drained and fatigued so he cannot just be a normal little boy. Longer-term consequences of the treatment could include future cancers and infertility. Hayden literally fights his way through each day, conquering an array of challenges that we all take for granted. Then it’s only to stabilize the tumors not to get rid of them. Hayden will likely be on and off chemotherapy for the rest of his life.

We are in awe of our brave son Hayden who is so courageous and brave on a daily basis. Hayden is only six years old but has undergone more physical and psychological challenges than most of us will experience in our whole lifetime. Please help us to help him by funding research for a cure. We have chosen to ride the 204 miles from Seattle to Portland on July 11/12 to experience what is likely a small fraction of the pain and fatigue that our Hayden experiences on a daily basis – especially given we are finding it impossible to do the required training due to the constraints in our life!!! We dearly hope you will join us in supporting research that will ultimately benefit Hayden and about two million other children around the world. Thank you so much for your support and generosity. We appreciate that times are hard in the economic crisis the world seems to be going through at present. Any sized donation will make a difference and the more people that donate the better (and then we really have to do it!!). Therefore, if you feel comfortable doing so, please pass this on to as many people as possible. Thank you so much, we truly appreciate your support!! A donation big or small can be given via our fund-raising Web site.

THANK YOU EVERYONE!!

Kirstin & Brendon