Golf tournament, silent auction raises awareness, funds for terminal brain disease
Posted March 30, 2014
The Green family's life was turned upside down two years ago when little Henry Green, just three years old, was diagnosed with Metachromatic Leukodystrophy, a degenerative brain disease.
Henry lost his battle with the terminial illness in 2012. Now his family, who lives in Raleigh, is working to raise money for research and to build awareness of the illness.
They are organizing the first annual Henry Green Memorial Golf Tournament, Dinner and Silent Auction at Crooked Creek Golf Club in Fuquay-Varina on April 15. The event includes a golf tournament and, if you're not a golfer, dinner and a silent auction.
I checked in with Henry's mom Helen Green to learn more about her brave son, the illness and how we all can help bring light to the disease and The Oligo Project, a cell therapy starting clinical trials at Duke Children’s Hospital this summer.
Here's my Q&A with Green.
Go Ask Mom: Tell us about you and your family. You lost your son Henry to a degenerative brain disease. Tell us about Henry, what he was like before the diagnosis?
Helen Green: My husband, Malcolm, and I met in college at N.C. State. We have been together 20 years and have been married almost 16 years. We have a six-year-old daughter, Maggie, and our son, Henry, would be four years old now.
From the minute Henry was born I couldn’t stop holding him and looking at him. During that first night after Henry was born, Malcolm woke up and looked over from his hospital recliner and said, “You’re smitten.” He was right. Henry was beautiful, smart and funny. He was an easy going kid who listened well, ate anything we put in front of him and slept great. He had big blue eyes, a sweet smile and an infectious laugh. He was tall and strong. Before Henry, I didn’t know a child only two years old could be truly charming – especially with the ladies.
GAM: What were the symptoms that led to his diagnosis?
HG: Henry developed completely normally for the first two years of his life. He was actually ahead in cognitive milestones. At his two-year appointment, I mentioned Henry was bow-legged and the doctor said lots of boys that age are and they grow out of it. In August 2011, I was away on a business trip when my husband called saying he was taking Henry to the doctor because his gait looked really strange. They immediately sent us to a pediatric neurologist. We were terrified.
Five months and many, many specialists later he was diagnosed with Metachromatic Leukodystrophy (MLD) at Duke Children’s Hospital on Friday, Jan. 13, 2012. MLD is a very rare, devastating and terminal brain disease. My husband and I are both carriers and even being a carrier is rare. MLD takes away all motor function ultimately resulting in death. By the time of his diagnosis, Henry could not walk without assistance. He had tremors, nystagmus [involuntary eye movements], drooling and difficulty swallowing.
GAM: What was his treatment like? You were in the hospital for quite a while?
HG: The only available treatment for a symptomatic child was a stem cell transplant. Henry underwent weeks of tests to determine if he was a transplant candidate. He was accepted, but not without concern about the chance for success given the state of disease progression. We decided to pursue a cord blood stem cell transplant in hopes of stopping the disease. We were aware of treatments in development at the time that could ultimately help restore neurological functioning in children like Henry.
Henry had surgery to get a g-tube and central lines for feeding and the administration of medicines. We checked into the Pediatric Blood and Marrow Transplant Unit 5200 on Feb. 22, 2012. About a week later he had nine days of intensive chemotherapy which reduced his white blood cell count to zero. Anonymous donor cells (a better match than his sister’s whose were in the cord blood bank) were given to him on March 7, 2012. He became a new boy that day – a new blood type and everything. Through all the pain associated with his disease and with transplant, Henry remained the strongest, bravest child – no, the bravest person – I have ever known.
My husband and/or I were with Henry 24 hours a day. Unit 5200 became our home. Our daughter lived with my parents who did a great job keeping her life as normal as possible. Our wonderful family and friends helped us get away from the hospital sometimes.
We waited and waited. Finally we knew the transplant worked. He was >99 percent donor cells and his body was producing the enzyme MLD caused him to lack. However, the toll of the treatment caused his disease to progress rapidly. By the time we left on July 6, 2012 after nearly 5 months inpatient, Henry had lost the ability to eat, laugh, smile, sit up, hold his head up or do anything that required controlled muscle movement. Malcolm and I learned how to take care of him - everything including g-tube feeding, IV medicine administration, g-tube medicines, physical therapy, pulse oximeters and suction machines.
We lived in an apartment near the hospital through the summer and returned to Duke due to transplant complications on Sept. 13, 2012. Henry was only home in his own room for a few weeks total between February 2012 and December 2012. We were inpatient most of the time between Sept. 13 and Dec. 14, 2012 when Henry died from Metachromatic Leukodystrophy. Malcolm and I were holding him in our arms when he was freed from his broken body.
GAM: You are holding an event in his honor in April. What's planned? What's the goal?
HG: We are having the first annual Henry Green Memorial Golf Tournament, Dinner and Silent Auction on April 15, 2014 at Crooked Creek Golf Club to benefit Duke Children’s Hospital – The Oligo Project. We are hoping for a great golfer turnout and a good crowd there to enjoy dinner and our awesome auction items. Our goal is to get almost everything donated for the event so all the money raised will go directly to Duke. This is a way we can honor Henry, remember Henry and allow his spirit to live on through our actions.
Our goal is to raise $25,000 which will go directly to a child’s treatment cost for terminal pediatric brain diseases. It’s an optimistic goal for our first year, but I can’t think of anything more important than saving a child and their family from suffering the effects of this terrible disease.
GAM: Tell us about the Oligo Project and why it's critical to raise money and awareness?
HG: The Oligo Project is a cell therapy starting clinical trials at Duke Children’s Hospital this summer. Science is catching up. Many diseases, including MLD and Multiple Sclerosis, cause a breakdown in myelin, the insulating layer that forms around nerves, such as those in the brain and spinal cord. Without an intact myelin sheath, communication between the nerves and the brain breaks down, ultimately resulting in death. This treatment stimulates myelin growth in the brain and repairs damage found in children with these diseases. This is the treatment we were hoping would help Henry.
The Oligo Project clinical trial candidates are children with terminal brain diseases who have no other treatment options. The trials will cost approximately $25,000 per child and generally are not covered by insurance. We can help support this research and these families by donating to this life-giving cause.
Not only are we trying to raise awareness about The Oligo Project, but we also want people to know about MLD. Metachromatic Leukodystrophy is just one of many diseases in the Leukodystrophy family and one of thousands of rare diseases. If detected early, there are more treatment options. However many pediatricians have never even heard of MLD and it is often misdiagnosed for months while a child continues to deteriorate until no treatment options are available. If by raising awareness of this disease we can help one child be diagnosed sooner, then we have made a difference. We can keep families from watching their child fade away during months or even years spent searching for answers.
Thank you so much for letting me share the story of my brave son – my hero Henry.
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