Connelly, affectionately called Batman, needs surgery to save his life but the medical team has been afraid he may not survive the surgery in the past due to his size. He is now experiencing mucous plugs and episodes that have caused him to stop breathing multiple times and a lot of angst and tears. The harsh reality is death of Kimmi and Rachael's beloved first born is staring them in the face. Connelly is a resilient and strong little boy and has fortunately started growing well. The medical team has told his moms the chances of survival with surgery would be dependent on his successful growth. They have navigated 5 years of creating bubbles from the outside world when necessary, multiple therapists, appointments, special programs, and total retreating when respiratory illness is high. Connelly has survived multiple flu/rsv seasons as well as a history making pandemic. The medical team has said it's time to try and conquer the multi step surgery needed to give him an airway that can support his growing body. It hurts to imagine that your child's life and a life saving procedure has to have a price tag. This unfortunately has a large price tag. The financial stress exacerbates the mental, physical and emotional distress of the situation for the Boothe family. As a friend, I told them I would organize a go fund me because it is VERY HARD for them to ask for help. I know they desperately need it right now. No matter what amount you are able to contribute it will most definitely chip away the layers of angst as they plan for this life saving experience that will happen in 6 weeks. Please share this with all of your friends and family - help it go viral so Batman can get the help and interventions he needs without a concern for the financial impact.

 

The Back Story:

Rachael and Kimmi Boothe knew they would raise a family together from the moment they met and fell in love. They had dreams of a basketball team because, after all, Rachael was a up and coming basketball player and coach; Kimmi was her greatest fan. Rachael was featured in Sports Illustrated palming a basketball in each hand with her arms spread wide in the peak of her talent and career. She had no idea the metaphor that image would be for her future life as a person, daughter, wife, and mother. Injuries benched her permanently. She turned to coaching but eventually her own medical challenges would take that joy away as well. It was okay. She was strong. She had a wing span to handle any challenge, and was married to the love of her life. Kimmi has a depth of strength, tenacity, and resourcefulness as she met extreme opposition and resistance when she came out as a young lesbian falling in love. She stood for what was right, got married, started planning the basketball team, and earned her bachelors and masters degrees. There was so much excitement when Kimmi became pregnant with their first child. Beautiful pregnancy, exciting gender reveal, and then the world stopped. Kimmi developed pre-eclampsia and was delivered at 25 weeks in a whirlwind scary way and medical teams that specialize in her and her soon to be born son were prepared to save their lives. Kimmi and Rachael stepped off a cliff, spread their wings together, and immediately stepped into the role of some of the most amazing and dedicated parents I have ever met. Kimmi and Rachael love unconditionally, possess hope even when it seems hard or impossible, and have sacrificed so much to provide for their family.

 

This is their story of Connelly in their own words.

Connelly, our miracle boy, was born at 25 weeks weighing 1 pound 9 ounces and 14 inches long. His chances of survival were slim to none. He fought hard and was in the NICU for 289 days. He was intubated for 7 months of his stay. He was diagnosed with a severe airway narrowing and experienced several dilations of his airway and a cricoid split. He had medication to have a hole closed in his heart, a spinal tap, staph infection, too many bronchoscopy's to count, chronic lung disease, paralyzed vocal cords, narrowed airway, cerebral palsy, he is non verbal, Autistic and has ROP disease of his eyes.

 

Fast Forward. He is 5 years old weighing 38 pounds and 40 inches tall. Connelly is still on oxygen and struggles to breathe everyday. He is finally growing but his tiny airway is not. His airway is a cocktail straw width for him to take his breath in and out. In April our worst fear happened and Connelly coded at home. He had no heart beat and was not breathing for 3 minutes. I had to perform CPR and thankful for our medical equipment to clear his airway. We got him breathing before the ambulance got to us. He has stopped breathing 3 other times since then. He needs surgery to save him but they are afraid he may not survive the surgery. So death is staring us in the face and we are hopeful his doctor gives us better odds for surgery.

 

We have to travel to Boston Children’s Hospital for one of the top physicians in airway disorders evaluate him. He will see a team of five specialists and then go to the OR for a triple scope. Then they will tell us if they can reconstruct his airway and what surgery they can do. He will be in the ICU for 2 weeks and in the hospital possibly for 1-2 months.

 

This journey has been long but our Batman has taught us so much. Our journey is not over but with your help we can get our boy the surgery to save his life. Thank you!

 

Enjoy some photos of their miracle throughout his journey. A happy determined little boy with two incredible moms that are able to hear what he needs when he cannot say it.