In 1984 Janet and Pelham Allen’s then two-year old son David was diagnosed with retinoblastoma. Despite ongoing treatment for four years, David sadly died in 1988. During this time Janet and Pelham set up the David Allen Retinoblastoma Appeal to fund research into Rb, and raised an incredible £250,000. In 1994 the David Allen Retinoblastoma Appeal merged with the The Retinoblastoma Society. Without this huge injection of funds and Janet and Pelham’s commitment CHECT would almost certainly not exist in the format it does today. Their au-pair even created the child in the eye logo that the charity still uses! Here, Janet and Pelham Allen update us on life as it is today for them.
As I sit here at my desk, our second grandchild is less than 48 hours old. I remember that I meant to write this after our first grandchild’s birth, but, you know, life…
As with all new babies in the UK, there were tests to check on their health. Most parents hardly notice these and take their healthy new-borns home, looking forward with great anticipation to the next few days, weeks, months, years together.
That was us, my husband and I, 42 years ago, when our second baby was born and before many of these tests were developed. A couple of years later, our world was turned topsy-turvy with a diagnosis of retinoblastoma. Years of hospital visits, with him and our other two, followed. The two girls were checked and found clear, but our little boy, blind and not yet 6, died from tri-lateral Rb. Nowadays, with the use of chemo this rarely occurs. The wonders of modern science.
Our black-cloud story is, however, tinged with a silver lining. After diagnosis, we were encouraged to set up a research charity to work towards finding, first the gene, and then progressing onto better treatment. This was at a time when the self-help group, the Rb Society was in its infancy and both charities were manned by volunteers, taking no funds away from doing good for the patients and their families.
The David Allen Retinoblastoma Appeal, with the help of hundreds, if not thousands of you (you know who you are!), raised close on quarter of a million pounds, before merging with the, now more secure, Rb Society and became over the years, what we now know as CHECT. We had, early on, secured the services of a researcher who is passionate about Rb, Zerrin Onadim, and under the supervision of the Institute of Child Health, she discovered the holy grail, the gene, so it was with optimism that we merged and we continued to work with the charity for a number of years, both on the general and the research committees. I believe Zerrin is still involved, doing great work.
Back to the present day, both our grandsons had the newborns’ checks, which now include a test for Rb. Both are clear. We are forever grateful that we and an awful lot of others put all our effort into the earlier years fundraising, enabling a test to be eventually put up as standard in those check lists. Our daughter and son-in-law will not have to go through the terrible time we did and they are two parents who definitely take notice of these checks and have come away reassured.
Thank you from the bottom of our hearts to all the researchers and fundraisers, not only for Rb, but for the other tests that are now performed, reassuring most parents, but at the very least, enabling early diagnosis for those not so lucky. As we all know, early diagnosis is paramount to getting the best treatment available. THANK YOU.
Janet and Pelham Allen