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$4,157 of $15,000
28%
37 donations

This fundraiser ended on 08/15/12

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We are uniting to raise money to help Jacob while he fights endlessly this disease that is yet to have a name.

Jacob is 9 years old and he is my great nephew. He’s also a little boy who is a devoted fan to his New England Patriots, Boston Red Sox, Bruins and Celtics. But, since June 2011 Jake has been fighting for his young life. A once happy, healthy, active, stubborn little boy he now struggles to walk, talk, eat, see and play. It began with a seizure at school. He was taken by ambulance to UMASS hospital and then admitted. Okay, a seizure disorder, we can deal with that. But it’s not so simple. The doctors couldn’t stop Jake from seizing. Within 2 weeks he was transferred to the ICU of Children’s Hospital in Boston. We all took a deep breath. Jacob would be ok because after all, he’s now under the care of one of the most renowned hospitals for children. But, even they struggled to keep Jake’s brain from continually seizing.
When Jake seized his throat would close and block his airway, so a breathing tube was inserted. Then he was heavily sedated so he wouldn’t try to remove the tubing. A feeding line was needed for nourishment. Every seizure suffered could damage Jacob’s brain. To rest Jake’s brain, he was placed into a medically induced coma. His medical team and parents, Sandy and Nick, made the difficult decision to biopsy Jacob’s brain.
This was Jake’s most critical time. Within hours of the biopsy his body began to swell and his vital signs began to fall. The breathing tube giving Jake oxygen was at risk of collapsing or becoming dislodged. Jacob’s prognosis at this time was poor. The treatment was too invasive and the high doses of medications were doing irreparable harm. He had endured so many tests, needles and painful procedures and the electrodes on his head led to such terrible sores scars were left. Our beautiful boy was slipping away.
We sat with Jacob to let him know how much we love him and tell him it was okay to rest and stop fighting if he needed to. By now he had fought and lost many battles, but he hadn’t lost the war. Jake chose to live and so he rallied. Over time, Jacob’s brain activity began to stabilize. He was slowly taken out of the coma. Life supporting machines were replaced by a G-tube for long term nourishment and a monitor to alert of seizure activity. He was transferred to a rehab hospital and then finally in October 2011, he came home.
The downstairs living room has been converted into a make shift hospital room for Jacob with a twin bed beside his because he is never alone. There have been many triumphs and many setbacks. Daily regimens of therapy, physical and occupational, had begun to increase Jake’s strength. Lots of hugs and kisses began to bring his smile back. Jake grew stronger and he was able to spend a few minutes each day in a medical stander. Over time he was fitted with a pediatric wheelchair and then leg braces. His progression allowed the use of a walker for minutes at a time, but with guidance and support close by. Smiles abounded when Jacob took his first step since that June day in 2011, even if with a walker. But early in 2012, his progress was slipping. Stomach flu, more than once, led to hospitalizations because seizure meds would not stay down. Jake developed pneumonia and again was hospitalized. As I now compose his story he is once again in Children’s Hospital. He could not breathe, yet no fluids were found. His salt levels dropped to such low numbers it began to cause issues with his kidneys. Jacob struggles to keep his body temperature at a normal level and he continues to have respiratory issues. Even during this hospital stay there was quiet talk amongst the medical team concerning “hospice” and “end of life care”, but Jacob rebounds. The truth is…we just have no idea what this is. We all agree that it’s likely Jake was born with a genetic defect, but testing to date has given no diagnosis.
Please help us put a name to this so we can better help Jacob fight. He continues to battle the symptoms, but the underlying cause continues to evade us. Although Jake has insurance Sandy constantly spends precious time battling over the things that Jacob needs. Sandy left her full time job to care and fight for Jacob and this has left a financial strain they shouldn’t have to worry over. The added expense of commuting and living in Boston when he is in the hospital is constant. Sandy and Nick are pursuing other medical opinions, including a possible trip with Jacob to the mitochondrial research center at Columbia University in New York, which would not be covered by insurance. We all thank you for your support, it means everything.
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