Golf tournament, silent auction raises awareness, funds for terminal brain disease

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.

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.

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.

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.

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.

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.

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.