Scott Joseph Kinley was born on 11 May 2018, 3 days after his due date, and was the picture of perfection for the first 48 hours. As Scott and family was preparing for discharge, Scott stopped breathing, having an episode of apnea. He was quickly stimulated and resumed breathing again; however, after a brief examination it was decided Scott would be admitted to the NICU for observation. Once he was moved to the NICU Scott had another few episodes of apnea and they consequently had to put in a breathing tube.

– Scott and his Brother, Liam, at birth, May 2018. –

The medical team began running tests and it was quickly revealed by MRI of his brain that Scott had a very large stroke on the left side of his brain. He was placed on a 24 hr video EEG which determined that the stroke had caused Scott to have seizures which were presenting as the episodes of apnea. After several rounds of different medications the seizures were finally stopped, allowing Scott to come off the ventilator. Scott spent 2 weeks in the NICU before being released home.  

After coming home, and despite being closely followed by many doctors, Scott had a relatively normal first few months of life getting to know his older brother, parents, and grand parents. It wasn't until his second follow up EEG that Scott was diagnosed with a new type of seizure, called infantile spasms. Scott was immediately placed on a harsh regiment of drugs to try to get the seizures under control.

– Scott's first introduction to Mrs. Clause, December 2018. –

Over the first year of Scott's life we have seen countless medical visits and consults. Scott's seizures were bought under control with drugs until December 2018 when they returned. Although through the addition of more medications we have been able to keep the seizures at bay and reduce them significantly, it is clear that a medical solution is not possible in the long term.

– Scott eating some banana while under going a 24 video EEG at Upstate Children's Hospital, January 2019. –

After a visit to Boston's Children's Hospital in February, it was determined that the best course of action and treatment for Scott's condition was to perform a Hemispherectomy. A Hemispherectomy is a neurosurgical procedure in which a cerebral hemisphere (half of the brain) is disconnected to prevent the damaged side from interfering with the development and function of healthy side. After undergoing more evaluations and tests Scott's surgery was scheduled for April 2019.

– Scott and Mommy preparing for the baby MEG at Boston's Children's Hospital, March 2019. –

Scott had his Hemispherectomy in April at Boston Children's Hospital. There were major changes in Scott that were noticed almost immediately post surgery. He had a greatly improved visual tracking, and seemed much more focused on people and things. 

– Scott and Mommy 4 days post op at Boston's Children's Hospital, April 2019.

After surgery Scott thrived in his therapies, and began to take great development strides. Improvement was noted in this motor skills, social skills, and verbal skills. As he continued grow he continued to show new skills and achieved many developmental milestones. He has showcased his will to live and flourish with a passion for life. 

– Scott's first Birthday, Syracuse, NY, May 2019.

– Splash pad at the Lion Safari, Hamilton, ON, June 2019.

– Catching Airplanes with Mommy, Boston, MA, September 2019.

– Scott leaning to walk in a homemade walker, September 2019. 

In July 2019, Scott participated in an intensive therapy program at the NAPA Center in Waltham, MA. At the end of his three week program he had shown dramatically improved skills in balance and gross motor. He could pivot on his bottom, take himself from sitting to supine, and army crawl. Today he continues to show progress taking full steps with someone holding his hands and continuing to improve his crawling, he cannot be kept still.

Scott is fortunate to have the support of his family and friends and lucky to have access to Early Intervention therapies. He has shown that he thrives with these therapies and the more that is provided to him the better he does. 

The family is further blessed with good health insurance that has covered a good portion of Scott's medical bills and expenses; however, the  deductibles, co-pays, travel costs, medical aids, and incidentals have added up to be a great financial burden on a young family.  To ensure that Scott continues to receive the level of care that he needs to flourish and keep up with his development the family is asking for any help that might be available.

If you have the ability, it is asked that you might consider a small donation to Scott's fund that would be used to help pay for Scott's Doctor's visits, medications, therapies, medical aids, and getting him to and from the various hospitals and appointments. We sincerely thank you for any and all support you may be able to provide including your thoughts and prayers. 

If you are interested to know more about Scott's progress please follow Scott's Blog on CaringBridge.org.

Thank you!