In the week after Gabe’s death, we were asked on several occasions if we really preferred a donation to the Children’s Tumor Foundation (CTF) to flowers. We said yes. I’d like to publicly thank the following parties for responding with generous donations:

Mr. and Mrs. Scott Friedman

The Long Branch High School Band Parents Association

Ms. Dorothy Hendricks

Ms. Janice Del Rossi

Mr. John Charles Allen

Mr. and Mrs. Ken VanWingerden

The Art VanWingerden family

Mr. Nathan Smith, Ms. Connie Smith, Joshua Smith and Danny Smith

Mr. and Mrs. Tony Butcher

Ms. Ruth Ann Allen

Alica and Don Bean

(If there are others, I’ll add their names as I am notified.)

5/2/08 Additions:

Ms. Anne Kohut

Mr. Jim Pickel

5/16/08:

Mr. and Mrs. William Job

Stephen, Gail, Tamara and Daniel Corti

5/27/08:

Margaret and John Lavaggi

6/6/08:

Linda and Frank Allen

David Fry

Bob and Karin Gaspartich

9/20/08

Berniece and Seongbin Pak

10/21/08

Mr. John V. Andres

Mr. D. Davis

Mr. and Mrs. Dennis Stitz

 

 

 

The Children’s Tumor Foundation was a godsend to me when Gabriel was diagnosed with neurofibromatosis (NF) at 6 months old. It provided information and hope that research was being conducted into this little-understood, but common disease. I had not kept up with the foundation’s work in the past 10 years because NF seemed not to be a big part of Gabe’s life. 

My interest in the work of CTF was rekindled this year by an encounter with an NF patient, by a minimal increase in Gabe’s symptoms and by a scientific discussion of an NF researcher’s stem cell findings. Gabe’s brother Mike and I decided to enter the Long Beach Marathon to raise money for CTF. (Mike will be a cyclist and I will walk/jog.)

Amongst the many questions we’ve asked ourselves in the past three weeks is what role NF played in Gabe’s depression. Yesterday, I did an internet search to see if any correlation exists between NF and mental illness. This possibility had never been mentioned by any physician or other resource I encountered.  Here is a summary of what I found:

“Many childhood psychiatric and behavioural disorders have

been associated with NF1. These include social problems, anxiety

and depression, social withdrawal, aggressiveness, obsessive

compulsiveness, and somatic complaints (Varnhagen et al.

1988, Spaepen et al. 1992, Johnson et al. 1999). Children with

NF1 are thought to be at special risk for attention-deficit–hyperactivity

disorder (ADHD; North 1997), with rates of at least 33%

being suggested (Kayl et al. 2000). Hyperactivity, reduced ability

to concentrate, and also sleep disturbances were the most

common problems reported by parents of children with

NF1 (Wadsby et al. 1989). Difficulties might be persistent, as

Samuelsson and Riccardi (1989) reported that 33% of adults

with NF1 experienced mental illness and that sleep disturbance

(‘reduced sleep’) featured prominently.”

Developmental Medicine & Child Neurology 2005, 47: 237–242 237

We believe many factors contributed to Gabe’s depression, and will never know for sure if NF was one of them. Nonetheless, Mike and I are entering the Long Beach Marathon with renewed motivation. Mike has already recruited some friends to ride with him and I’ve solicited my first sponsor. So, now you know why these donations to CTF mean so much to us and why Mike and I are pressing ahead with the marathon.

Sponsorship information will follow at a later date. If you don’t want to wait, you can make a donation in Gabe’s honor today.