Fundraising appeal for Danny in his battle with cancer
For most children this is a time for dreaming of what presents they will find under the Christmas Tree. At six years old their dreams are full of Santa and reindeers and having fun with their families and friends.
Six-years-old Danny Norris, from Clonmel, is no different. He too is waiting for Santa to come to him and his brothers. Yet Danny needs a much greater gift than Santa can bring. He needs your help to get him the medical help he desperately needs. He wants to see smiles of joy and relief on his mammy and daddy’s faces. He wants to play and have fun with his brothers Charlie and Shay. He wants to feel well again.
In May 2020, Danny wasn’t feeling himself. Intermittent tummy pain, broken sleep and just generally out of sorts. His parents brought him to the GP. On examination everything seemed okay. However, when his symptoms returned and became worse, Danny ended up in the Paediatric Ward of Tipperary University Hospital. Very quickly it became apparent that Danny was a very sick little boy.
By 10pm on July 5, 2020, only a few hours after admission, the word oncology was mentioned and immediately plans were put in place for our transfer to the Children’s Hospital in Crumlin via ambulance the next day. Over subsequent days, Danny was diagnosed with Stage 4 High Risk Neuroblastoma.
Danny’s life and the lives of his parents and brothers changed forever that day as their journey into childhood cancer began.
Neuroblastoma is a high risk cancer of the sympathetic nervous system. This rare and aggressive form of childhood cancer affects approximately 7 to 10 children in Ireland annually.
Initially, Danny had a tumour on the left side of his abdomen which encompassed his left kidney and adrenal glands, as well as metastases on his femur, rib and vertebrae.
At diagnosis, High Risk Neuroblastoma carries a relapse rate of 60%. Since he was diagnosed, Danny has endured 12 rounds of chemotherapy, a nephrectomy to remove his kidney, high doses of chemotherapy, a stem cell transplant that unfortunately caused severe complications, 23 sessions of radiation, as well as multiple bone marrow aspirates, blood transfusions in addition to many other medical procedures.
If Danny were to relapse, his condition is even more challenging to treat successfully. Sadly, survival rates for those children who relapse is less than 10%.
This is a stark statistic for the Norris family.
As if Danny hadn’t been through enough, a complication arising from the high dose chemo administered prior to transplant meant that Danny developed a condition of the liver called VOD. This resulted in Danny requiring treatment in Intensive Care. Danny’s liver and kidney shut down and for seven days. His family was unsure of the outcome.
At this point, Danny was carrying 9kg of extra fluid that his body could not eliminate. It was explained to his parents that, while Danny needed to be put on dialysis, it wasn’t an option until his low blood pressure stabilised but there was no guarantee that this would happen.
The family was distraught.
Thankfully, after seven nights in ICU Danny showed signs of recovery and was eventually treated and discharged home.
When Danny was strong enough, he commenced his 23 sessions of radiation. This involved Danny’s parents travelling to Dublin from Clonmel each day for almost 6 weeks. It meant so much to them to be home each evening to collect the older boys from school, have dinner, do homework and have family time together. Time together as a family is precious.
What Danny needs most now is to access a Bivalent Vaccine trial in Memorial Sloane Kettering Hospital (MSK) in New York next year. The vaccine aims to reduce the chances of Danny’s Neuroblastoma returning. MSK researchers have led the way in developing new ways to diagnose and treat cancer. They maintain one of the world’s most dynamic programmes of cancer research.
This cutting edge treatment is currently unavailable in Ireland and is not funded by health insurance or the HSE.
His family is currently appealing to the Minister for Health to assist in this matter. The new trial is actively accruing and is 5 years in duration. If eligible, Danny would receive 14 injections of the vaccine: 7 in year 1, 4 in year 2, and 1 in years 3, 4, and 5.
Danny’s mum, Lisa, says that since his diagnosis, life has changed dramatically not only for Danny, but for the entire family. "It has robbed the boys of their previously carefree existence and made them members of an exclusive club, a club that nobody wants to join," she says.
HOW YOU CAN HELP
The email address for those who wish to organise a fundraiser for Danny, or to get any information is dream4danny@gmail.com. Danny’s mum Lisa can be contacted on 087 1387159.
The Go Fund Me Page for donations is https://gofund.me/ec437446