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.)
Ms. Anne Kohut
Mr. Jim Pickel
Mr. and Mrs. William Job
Stephen, Gail, Tamara and Daniel Corti
Margaret and John Lavaggi
Linda and Frank Allen
Bob and Karin Gaspartich
Berniece and Seongbin Pak
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.
Marathon. A long, exhausting journey. Seems apt.
Back from Calvin and looking forward to reconnecting. Love, LL
Today, I was looking through the contacts on my phone, and I had to go past Gabe’s number to get to the person I was trying to call.
I miss Gabe so much, and thank you for trying to make sure that this does not happen to others. I made a donation, and I will continue to check for news updates often. I am so sorry.
Thank you so much. Our hearts are broken beyond description and our prayers are with all who loved Gabe and all who suffer such grief.
Today I lift you to our Lord in praise.