Derik H. is a friendly twelve year old from Connecticut. When I met him at a VHL meeting in Brookline on Sunday I was struck by how upbeat and down to earth he is. Derik enjoys Karate; he’s currently working towards his green belt and likes to perform with the ‘Demo Team’. He loves his dog Percy, as you can probably tell from the picture. In fact I would guess he adores all animals from the way he was running around with Joyce Graff’s labradoodle ‘Snowy’ at the meeting.

On the one hand Derik is an average 7th grader but on the other hand he is rare. Rare because he has VHL which is thought to be the result of spontaneous mutation as opposed to being inherited. As Derik’s mom Ann put it on Sunday ‘that makes him one in a million’. This is true in more ways than one, as shown by his inspirational fundraising. Despite only being diagnosed earlier this year and undergoing surgery to remove a brain tumor in March, Derik has already raised $250.00. No sooner was Derik sent some VHL wrist bands to sell than he had sold them -- all 30 of them -- within two days, and was asking for more.

As with many cases of VHL, Derik’s diagnosis was complicated and a long time coming. Derik’s symptoms began over two years ago; he was vomiting every morning and consequently didn’t gain weight for two years. After numerous doctors’ visits Derik was eventually put on medication for seasonal allergies. The symptoms seemed to be getting better but at his next visit to the nurse Derik casually mentioned he’d been getting some headaches. The nurse suddenly realized there might me more to the vomiting than allergies -- nausea can be a symptom of brain tumors. While his doctor remained unconvinced, she agreed to order an MRI of his head.

On Friday January 13th Derik was diagnosed with a brain tumor which needed to be removed. Derik was admitted to hospital and underwent several procedures before the tumor was removed. Obviously it was a frightening time for Derik and his family but they were greatly comforted by the number of people, including many whom they hadn’t seen for years, who pulled together to support them. Ann also found enormous solace in her faith in God.

Before Derik’s surgery the neurosurgeon informed them of the possible long term outcomes. It seemed probable that Derik would need to be on a feeding tube or ventilator, and would end up with severe balance issues and need a wheelchair. However, Ann remained positive and put her faith in God. When Derik woke up the day after the surgery, although he was groggy and distressed he managed to come off the ventilator and was able to walk to the rest room. The neurosurgeon was astounded and commented “If you had said to me this kid would be up, breathing on his own and asking if he can have munchkins, I would have called you a liar.” Ann believes it was a miracle.

Who knows how far a positive attitude, loving family and proactive approach will reach, but in Derik’s case it certainly helps. He is making a steady recovery and his hemoglobin levels are back in the normal range. He still has a cervical spinal lesion that will need to be removed in the future.

Derik’s current target is to raise $5000 for the VHL Cancer Research Fund. He is determined to raise awareness and money in order to help find a cure for himself and others. Maybe he gets his activist approach from his mom, who is already looking to become Chapter Chair, start a support group in their area and thinking of new fundraising ideas . . .

If you would like to help Derik achieve his target please make a donation at http://firstgiving.com/Derik. Or create your own personal fundraising page at www.firstgiving.com/vhl

As printed in the VHL Family Forum 14:1, April/May 2006. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.