David Nassy, the father of two young children both diagnosed with acute lymphoblastic leukaemia (ALL) has described the devastation he and his partner, Marie-Anne, have suffered since their son’s diagnosis in January 2016 and their hope that cord blood stem cells from their newborn baby will offer a lifeline for the family.
Denny-Rae’s shocking leukaemia diagnosis
“It should have been a happy time” David has written, on the couple’s page on the crowdfunding site, Just Giving, “as our daughter was to be born shortly.” But then David and Marie-Anne’s “world fell apart.”
Denny-Rae, who had recently turned three, was unwell one morning and so accompanied his mum and dad to the hospital for a prenatal scan. “While we were waiting,” David explains, “we decided to take Denny to see the paediatrician expecting to hear he had a cold, or a bug of some sort! No!! We were hit with the bombshell that Denny had ALL. We were absolutely devastated, and for the last two years, we’ve watched our son go to hell and back. The doctors said if he had gone to sleep that night, he most likely would not have woken.”
The family discover Marley-Mae also has ALL
Two years later the family’s nightmare deepened as Marley-Mae, barely two years old, was also diagnosed with ALL. “We thought things couldn’t get any worse but on January 12 this year our daughter was diagnosed with the same dreadful disease. She has deteriorated over the five weeks since being diagnosed. Words cannot express our feelings.”
Cord blood offers new hope for the family
The news that Marie-Anne is expecting another child has given the family and their medical team new hope. The umbilical cord that is now sustaining Marie-Anne’s unborn baby is packed with stem cells – the parent cells of all other cells in our bodies. Scientists are able to collect these cells after birth (they would otherwise be thrown away along with the cord and placenta) and use them to treat patients with diseases like ALL.
“Marie-Anne is 32 weeks pregnant,” says David, “and is due for a Caesarean section. A team from Oxford are coming to take the cord blood (stem cells) from the new baby, hoping for it to be a match for Denny.” Transplantation of stem cells between siblings to treat leukaemia is not new, and there is every reason to hope that Denny’s baby sister could save his life.
Marley-Mae may need a bone marrow transplant if her condition deteriorates. A single cord blood sample usually contains enough stem cells to treat one child.
What is Acute Lymphoblastic Leukaemia?
ALL is a cancer of the blood and bone marrow. This type of cancer usually gets worse quickly if it is not treated. ALL is the most common type of cancer in children.
The National Cancer Institute explains how ALL develops: “In a child with ALL, too many stem cells become lymphoblasts, B lymphocytes, or T lymphocytes. The cells do not work like normal lymphocytes and are not able to fight infection very well. These cells are cancer (leukaemia) cells. Also, as the number of leukaemia cells increases in the blood and bone marrow, there is less room for healthy white blood cells, red blood cells, and platelets. This may lead to infection, anaemia, and easy bleeding.”
The cost of care
David and Marie-Anne are now staying at the Royal Marsden Hospital in Surrey while both Denny-Rae, five, and two-year-old Marley-Mae undergo treatment for ALL and are finding finances increasingly strained. “We can’t keep up with the costs of travel to and from London,” says David, “living in hospitals and having to pay £1,000 rent a month.”
You can help Denny, Marley, David and Marie-Anne by contributing to their fund on Just Giving.
Birth offers the only opportunity to save your baby’s cord blood stem cells for the future. Find out more about our services here.
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BSc (Hons) Microbiology
Biovault Family CEO, Kate Sneddon, joined Biovault in July 2009 and became Chief Executive Officer in 2016. As health industry professional her experience includes working as a microbiologist and leader at GSK for over 10 years. Her expertise in cord blood banking has been recognised in her awards, features in Parliamentary Review and Parents Guide to Cord Blood, as well as contributions to research with UCL and others.