Join us for the 2nd Annual TopGolf for The Sweetest Boy in honor of Connor Mackey

[Lake Mary, Florida] Please join us Sunday, June 25 from noon - 3 p.m. at TopGolf in Lake Mary for the 2nd annual TopGolf for The Sweetest Boy to benefit The Cure Sanfilippo Foundation. Sanfilippo Syndrome is a terminal genetic disorder likened to Alzheimer’s disease in children, which currently has no known treatment nor cure. 

This event is hosted by Shaun and Bonnie Mackey in honor of their late son Connor “The Sweetest Boy” Mackey and includes lunch, drinks, live music, and of course, golf for novices and experienced alike. Tickets are $80 for one and $150 for two. 

If you can’t attend, please consider donating using the “Donate Now” link on the registration page. Register and/or donate at this site: https://give.curesanfilippofoundation.org/event/topgolf-for-the-sweetest-boy/e402629

About Connor 

Bonnie and I always wanted to be parents. After trying for five years to become pregnant, we ultimately attempted in vitro fertilization. We were told there was over a 90% chance of becoming pregnant with one embryo and a 50% chance of having twins. A healthy pregnancy and delivery later, Connor and Aelish were born into the world on October 21, 2017.

We first received a diagnosis of Sanfilippo Syndrome for Connor in August of 2019, about 2 months before his second birthday. His pediatrician recognized some physical traits of Sanfilippo Syndrome and ordered the workup for the disease. The day we found out that he likely had this disease our world fell apart. Likened to Alzheimer’s disease in children, we were devastated that our son was going to suffer and likely die as a teenager without the probability of a cure or treatment.

Learning that there were several clinical trials involving gene therapy taking place, we promptly pursued these trials. Connor was denied 3 different studies, of which was denied twice. We knew of one additional study taking place at Duke Hospital in North Carolina, but we intentionally saved it for last knowing that it involved a bone marrow transplant and a 10% mortality risk. After a discussion with the physician conducting the study and a family that seemingly benefited from the study, we made the difficult decision that the risk of death from BMT was a lesser evil than dying slowly and painfully from Sanfilippo Syndrome. 

Bonnie and Connor traveled to North Carolina in August of 2020, where Connor was ultimately admitted to the hospital for a bone marrow transplant. I traveled to-and-from Duke Hospital in North Carolina and home in Florida on my days off work to spend time with Connor and Bonnie. After enduring two rounds of chemotherapy, regular testing and invasive procedures, confinement to the hospital unit, and vital sign checks around the clock, one rarely saw Connor without a smile on his face. He walked the halls of the unit daily while singing nursery rhymes ALL DAY. His joy was infectious with the hospital staff and other families on the unit. People would come to sing with him in the hallway. He never faltered. 

After about 7 months in the hospital, we were told that Connor’s second bone marrow transplant had failed. Connor had no functioning immune system as a result, and there was nothing further that could be done. We were advised of a couple of Hail Mary treatments, but given that his life expectancy was days to weeks and these experimental treatments were not expected to work, we decided to take our sweet boy home to spend his final days with his family in his home—not a hospital.

We showered him with love and affection in his last week and a half at home. Surrounded by family, he died peacefully in our arms at 3 years old. Connor was and is so very loved. All who have known Connor have a more enriched life because of his joy that he exuded, and the world is a lesser place without him. We’ll never forget “Baby Shark” or “10 Little Monkeys” or “The Wheels on the Bus” to the tune of Connor Mackey. The sweetest boy will be forever missed.

Connor gave so much to the world, and it would be a tragedy not to honor his legacy. The most appropriate way we saw to honor Connor’s legacy is to help find a cure for Sanfilippo Syndrome. Cure
Sanfilippo Foundation is a fantastic 501 c3 non-profit that has contributed millions of dollars to research for this rare disorder that would otherwise go underfunded. Your support by attending or donating would mean the world to our family.

                                                                           Shaun Mackey, Connor's Dad###