Medical Expenses for Jackie ♥️

Edit: Thank you all so much- for those of you who have messaged, shared the post, and donated to the Bests. I am extending the goal to see what magic we can make for this amazing family. ♥️

Hello friends and family of Kaleigh, Luke, and Jackie Best (and maybe even kind strangers too).

We are hoping to raise some funds to decrease the financial burden on Kaleigh and Luke as they have had to seek international care to meet Jackie's needs. We are hoping to raise money to cover the cost of flights and accommodations to Spain for Jackie's surgery. Kaleigh and Luke have spent over $100,000 CAD in the past year to care for Jackie's medical needs which they have not been able to access in Canada.

Jackie requires this surgery urgently as she has been diagnosed with Tethered Cord Syndrome, which causes progressive (and sometimes irreversible) nerve damage to bowels, bladder, legs, and feet and causes back pain. This surgery should relieve Jackie's back pain and prevent damage to her legs and feet so she can retain the ability to walk. Hopefully, the surgery will help with her bowel and bladder issues, but the damage already done may be irreversible.

Their story:

Jackie is a sweet girl who is very curious, kind, and silly. She loves airplanes, machines, and space. She will watch airplanes at the airport daily and she will tell you if they are a "737" a "Dash-8" or a "Cessna."

Jackie has experienced chronic constipation since she was 9 months old. She has had limited response to high doses of Restoralax (as well as other dietary and liquid intake). In November 2022, she received another x-ray to evaluate her constipation and the pediatrician identified that she required an "emergency level" of care but there was no Gastroenterologist available at BC Children's Hospital (BCCH) and it would likely be that way for many months. Kaleigh and Luke contacted Canadian hospitals without success, tried to contact adult proctologists without success, and therefore began contacting and applying to various international hospitals. They took 5 weeks off work and ended up going to the Children's Hospital of Philadelphia (CHOP) in February and March 2023. They received wonderful care with Dr. Kapavarapu, who ruled out various disorders but did identify that Jackie had an abnormality on her MRI. They met with Dr. Heuer, neurosurgeon at CHOP, who identified that she has Tethered Cord Syndrome, which can cause nerve damage to the bowels and bladder, cause back pain, and could eventually result in nerve damage to her legs and feet and impact her ability to walk. Even with daily enemas (on top of the medications and a high diet of fruits and veggies), she struggles to empty her bowels and has considerable discomfort and pain. They are on a heartbreaking journey and Kaleigh and Luke are doing their very best to care for Jackie without very much medical support in Canada.

Kaleigh and Luke were unable to afford the Tethered Cord release surgery (lumbar laminectomy) at CHOP and fervently went searching for another place to have the surgery done. Initially, they were promised a prompt surgery at BCCH, but they have still not been able to have an appointment with a neurosurgeon there. They were told by a member of the neurosurgery team at BC Children’s that they would likely wait to consider doing surgery until Jackie begins to lose the ability to walk or until she has an excessive number of UTIs. Kaleigh has also applied for the surgery through Shriner's, but the application was denied because they cannot provide this type of neurosurgery to Canadians. Their wonderful family doctor has chatted with CHEO, Sick Kids, and Alberta Children's to no avail. Kaleigh applied to many international hospitals, and they decided to go to the Hospital Sant Joan de Deu in Barcelona, Spain, as Dr. Hinojosa is a neurosurgeon with vast experience with Tethered Cord and the surgery is $57,000 CAD. Jackie's surgery is on May 19th.

Jackie’s chronic constipation and discomfort has continued to worsen. An x-ray revealed significant bladder and bowel distention. On April 30, they traveled to BC Children’s to get an emergency NG tube clean out for Jackie and were hospitalized with her for 3 days. Despite already being on the waitlist for Gastroenterology (GI) and requiring emergency GI services, there was no GIs available to consult about her emergency treatment, nor her long term treatment. Jackie was bumped up on the waitlist to see GI in a year from now (instead of two years). This means that Luke and Kaleigh are also anticipating that they will have to travel back to Philadelphia sometime this year to meet with Dr. Kapavarapu to provide Jackie with the specialized GI services that she deserves and requires. The medical bills continue to build, and your generosity would be greatly appreciated to relieve some of the financial stress on Luke and Kaleigh.