Jameson Bates was born precisely half way to Christmas in the calendar year. We chose his first name because it seemed to fit him once we looked into his eyes. We most often called him Jamie or Jamie-Doodle.
Jameson was born with the chromosomal abnormality known as Down Syndrome. He had Trisomy 21, meaning that he was the one in approximately 3,800 babies that is born with Down Syndrome as the “luck of the draw” and not inherited genetics. Initially, he excelled developmentally and tested at a six month level in a kinetics study he participated in through the University of Michigan. At four months of age he was learning to smile. He was a diligent worker in his therapy sessions and a gentle spirited little man.
Within days of receiving his DPT immunization at the age of four and a half months, Jameson began to exhibit seizure activity. He was diagnosed with Infantile Spasms at just over five months of age. We believe that his seizures are a direct result of the pertussis portion of his immunization. Genetic testing of his parents following his death appear to substantiate this assertion as no genetic abnormalities were found in either of them.
Within a very short period of time, Jamie-Doodle lost his developing ability to smile and many other motor skills that he was cultivating. We were informed that one in five children who have infantile spasms die. Of those who live, 20% are mild to moderately affected cognitively and 80% become severely to profoundly retarded as a result of this type of epilepsy. We tried many medications, but with the exception that one would occasionally offer a temporary hope, Jamie’s condition only worsened.
From his EEG’s we found that at its peak activity Jameson had an infantile spasm seizure approximately every 20 seconds internally. Not all of this activity manifested in an external physical manner, but the EEG confirmed these constant brain wave disturbances. The doctor told us that Jamie would experience a feeling like being “drunk all the time.” Jamie’s seizures were resistant to a huge number of drug therapies. One Canadian medication, called Vigabatrine, temporarily slowed the progress of the seizure disorder, but never completely curtailed it. He was on that medication for just over a year before he passed away.
After nine months with one pediatric neurologist and contacting doctors, experts, health and research organizations around the world, we decided to change neurologists in August 2005. One name stood out among a variety of “experts”. Dr. Harry Chugani, Children’s Hospital of Michigan, is a foremost expert in pediatric epilepsy, particularly infantile spasms. Dr. Chugani suggested ACTH treatment and we began this therapy in September. Jamie had six infantile spasm free weeks that fall. During this time, he developed grand mal seizures, but was able to progress developmentally as they were only periodic versus the constant infantile spasm seizure activity he had been experiencing. He smiled and laughed freely throughout these weeks. It was the only time we feel he got to truly be just himself throughout his entire short life. His laugh brought life and joy back to our home after months of fear and sadness.
ACTH is a steroid. It has a side effect of significantly suppressing the immune system. Jamie’s infantile spasms reoccurred in early November and we immediately began a second round of ACTH therapy. Despite the risks, we felt this was Jamie’s only hope.
Notwithstanding our painstaking efforts to keep him well, Jamie caught a cold. It developed into pneumonia which spiraled into escalating seizures. We were told by multiple doctors that he had developed Lennoux-Gastaut Syndrome which is a proliferation of numerous seizure types and uncontrollable seizure activity. The prognosis for children his age with this syndrome is extremely poor with most living to be less than five years of age. Jamie lost the ability to control his lung function and his seizure activity continued to escalate. He was in and out of the Pediatric Intensive Care Unit (PICU) for nearly a month and spent 35 days at Children’s Hospital of Michigan. We held out hope, but were desperately concerned.
We were told by all of the specialists on Jamie’s case that they could not “cure” Jameson’s lung collapsing issues without putting him permanently on a respirator and that his seizures were likely to continue to escalate. We were told that his suffering could only increase without any possibility of reprieve or improvement on either the respiratory or epilepsy fronts. On January 20, 2006, we elected to take Jameson home on hospice. He immediately rebounded. He was so happy to be home. His attitude improved and he “lit up”. However, throughout the next nine days he again declined. On January 29, 2006 at 4:33PM Jameson drew his last breath while surrounded by his parents and brother. He opened his eyes and then looked no more.
Jamie was our second child. His 26 month older brother, Logan, loved him dearly and was a kind and tender sibling. Logan misses Jamie and even these many years later, he speaks of him often. We encourage Logan to share his feelings and express himself about the loss of Jamie.
People may think, as many have expressed, that a handicapped child or special needs person is somehow valued less, perhaps even loved less even by their family. I tell you the truth in that this child was loved as much as his brother and the sister that came after him; and more freely and deeply than many children on this earth. He gave love and taught unbelievable lessons in the unfathomably difficult and fleeting 19 months that he shared our lives. We will never be the same; not only from grief, but from who he showed us we could be and how we could live. We strive to honor his legacy whenever and where ever possible. Memorial and Endowment Funds have been established through the Shelby Community Foundation, called “Jamie’s Smiles,” to celebrate Jameson Allen Bates and to help other children with special needs through yearly grants.
Jamie-Doodle’s life was short, but his impact great. God bless this child and keep him close while we cannot.
Jamie’s Smiles is a charitable fund held & administered by the Four County Community Foundation PO Box 539, Almont, MI 48003 - 810/798-0909
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