Sam and Liza's first and only son,Grant Harrison Gabriel, arrived strong and healthy in October 2016. He quickly developed a charming personality with his big smiles, laughs, and mannerisms. Grant enjoyed his first holiday season spending time with family and gazing at the many colorful Christmas lights. 2017 was then off to an encouraging start. Grant and his big smile were a hit with his new daycare teachers and classmates. He was very playful and inquisitive from the beginning. In his first 5 months, he seemed to make progress each day. Sam & Liza felt truly blessed to watch him grow so fast, discover his toys, read along with his books, or dance to his favorite songs.
Thankfully Grant had been healthy through nearly 5 months. Then on February 28, one day after Sam’s birthday, the daycare called to say Grant had a fever and needed to be brought home. From that point on, life would never be as easy for little Grant or those close to him.
By March 1, Grant was in the ER and then to the PICU once the doctors were able to confirm a diagnosis of bacterial meningitis. The next days were beyond painful to see his condition only get worse. Infections in his blood and then also in his lungs were exasperating the efforts of the growing team of doctors and nurses urgently working to save Grant’s life from this sudden attack. In less than 24 hours, these infections had taken the life out of little Grant, going from the lively baby boy to a hospital patient unable to breathe on his own with enough wiring and tubing connected to him to frighten any parent. The early days at the hospital were lived hour by hour but miraculously his condition did improve. The infections were treated with strong antibiotics and after the first week, Grant was breathing on his own again. However neurologists confirmed through MRIs that the damage had been done. Grant was truly lucky to be alive but the meningitis devastated a major amount of his brain and he had completely lost his hearing as well. Doctors anticipated a diagnosis of cerebral palsy for Grant going forward and that he was expected to lose speech and motor skills. After almost 4 weeks in the hospital, Grant and his family were now on an entirely new path in life that involves a team of 15 different doctors, therapists, and specialists dedicated to providing the best chances for Grant’s future.
In the coming months, Grant would undergo 2 surgeries for a cochlear implant and for a feeding tube. The cochlear implant has restored a sense of hearing again and the feeding tube ensures he gets the complete amount of nutrition and medicine needed. Grant has been seeing physical, occupational, audio, and speech therapists. There has been progress but it is very slow process. In addition to the daily therapies, there are growing needs for specialized equipment. Special standers, wheelchairs, custom arm and leg braces are all needed to provide support and proper posture while he grows without the ability to control his own body. Grant is now over 2 years old and has been through very much, yet there is still so much more to his journey. Part of Grant’s care also involves traveling to attend workshops and receive specialized treatments when possible. It is to continue to provide all possible opportunities for Grant that, every year, we fundraise to cover 50% of Grant’s annual medical care expenses.
With a diagnosis of spastic quadriplegic cp, seizures, severe developmental delays, dysautonomia and hearing loss, Grant’s family has been dedicated to providing the best opportunities for Grant today and going forward. It is a blessing to be located in a city with a high concentration of pediatric doctors, specialists, and therapists that provide critical treatment on a daily basis. However the cost of care for a disabled child is very overwhelming and has only added to the stress of the situation. With Grant’s future in mind, the family is kindly asking for support to help secure traditional therapies, specialized daycare and equipment, and other available treatments. Grant has various traditional therapy sessions that he attends daily. These include physical therapy, occupational therapy, speech therapy, and audio/verbal therapy to support development of his cochlear implant device. Unfortunately insurance covers a small amount of the total therapy sessions that he would ideally attend each year. These therapies help develop Grant’s motor and feeding skills as well as not lose any range of motion.
Grant is not able to attend a standard school because of his medical complexity but is fortunate to attend a private school that specializes in caring for special needs children. The cost is high but their program has produced results beyond what doctors and therapists had predicted for other children. Grant was fortunate to receive a stem cell therapy treatment from his own cord blood through Duke University. This is a clinical trial level treatment that Grant was able to receive under an expanded access. To maximize results from this and other treatments, we are attempting multiple stem cell sessions combined with his intensive therapy program. The generosity of so many loved ones and strangers alike has been graciously appreciated with each day that Grant endures. This little one’s life is still so early and there is so much faith that there will be the right support and resources to give Grant the best chance going forward. Thank you for taking the time to get to know little Grant and his story.
The Numbers: We anticipate out of pocket costs of $60,000 – $75,000 per year
to attempt 2-3 treatments in addition to school tuition, prescriptions, supplies etc.
Special Needs School Tuition - $34,000/year
Medicines/Supplies/Co-pays/Therapy (Out-of-Network) - $7,814/year
Completed Treatments 2017-2019
2 Cord Blood Stem Cell Treatments at Duke University - $4,000
Fascia Therapy Workshop in Toronto - $4,000
Caregiver Workshops for Brain Injured Children in Philadelphia $6,000
Additional Target Treatments for 2019-2020
Napa Intensive Therapy Program in Boston - $8,000
Stem Cell Treatments - $12,500 to $16,000 each (Highest Rated Stem Cell Facilities for CP Treatments)
Please contribute today to help provide for the best resources for Grant.