Benjamin was born on May 15, 1996 in Meriden, CT. He was 7 lbs. 14 oz. and 21” long. He had two bleeds on the brain, a fractured skull and was jaundiced at birth and spent 10 days in NICU at the UCONN Medical Center. Around 3 months he was diagnosed as having seizures. He was started on Phenobarbital to control the seizures and had numerous blood tests and spinal taps. His doctors at the Connecticut Children’s Medical Center could not determine what was wrong with him. At 6 months old he spent two weeks in the hospital to undergo intravenous treatments for seizures. While he was in the hospital, he was diagnosed with Menkes Syndrome.
He was the first patient at Connecticut Children’s Medical Center to be diagnosed with Menkes Syndrome. We tried the copper histidine injections but the shots were very uncomfortable for him and would leave hard bumps under his skin. After a month we discontinued the copper treatments. At 11 months old he was hospitalized for pneumonia and RSV. While he was in the hospital for 2 weeks, he had a barium swallow study done and determined that when he swallowed the fluid was going into his lungs. A NG tube was put in. Ben was very irritable and fussy for the first year and needed to be held constantly due to the continuous seizures he was having. After the first year he was less fussy and even enjoyed his stroller which he did not like during the first year of life. When he was 1 ½ we had a G-Tube put in. This made feeding much easier and it was also easier to leave him with family members to watch him. When he was around 4 he developed diverticulitis, so he had to be catheterized every 4 hours to prevent UTI.
He had the classic symptoms of Menkes – weak and floppy muscles, seizures, kinky hair, feeding difficulties, low body temperature, pale skin color, frequent UTIs, brittle bones and respiratory difficulties. He could not speak or even hold up his head. To care for him at home, we had an oxygen tank, a nebulizer machine, suction machine, a feeding machine and a pulse-ox machine. He had a customized wheel chair and a hospital bed, donated by a family member.
Ben had nursing care over night and also during the day so his parents could go to work. He loved his nurses, especially Bobbi and Melissa. He was in the Birth-to-Three program, through Easter Seals, until his third birthday when he transitioned to the public school system. Once in the public school system he received occupational therapy, physical therapy, water therapy and music therapy; as well as services from the Board of Education Services for the Blind since he had cortical blindness. If the therapists had him do something he did not like he would pretend he was sleeping. He received the services at home and in May 2002 he made a visit to the school where he would start attending one day a week in the fall of 2002. He enjoyed the children that were in the class and they were all excited to see him, because the therapists had told them about Ben.
For his fifth birthday, his aunts and uncles and mom’s friends sponsored a trip for him, his mom, and his nurse Bobbi to spend a week at Walt Disney World in Orlando. His grandma, aunts, uncles and cousins were all able to join him on his adventure. Like all five year olds, he had a terrific time in Orlando. Winnie the Pooh joined Ben and his cousins for his birthday party at Magic Kingdom. He also enjoyed the Electric Light Parade at night. He just loved being with his cousins and doing things with them. He also enjoyed spending Fourth of July and the Easter Egg Hunt at Aunt Roni’s house. He saw another little girl in a wheelchair just like his at the Easter Egg Hunt. He liked his visits with Grandma and Grandpa, and enjoyed his quality time in the afternoon with Grandma when she would come over and help care for him. He enjoyed the walks around the block and the picnics at the park to feed the ducks. Ben also liked rides in his wagon and wanted to go FAST.
On July 11, 2002 Ben went to be with the Lord. His health had been slowly going downhill and contracted pneumonia once again. He is greatly missed by his parents and extended family, but we know that he is no longer suffering and is in a better place now where he can run and play like he couldn’t during his short life on the earth. We are grateful that he was able to touch our lives, even for the short period he was with us.
Posted: June, 2010