Build a Safe Space for Katie

When Katie Hoskins had a strange episode at home, her mom knew it was more than a teenager nearly passing out. Though that is exactly how it appeared to the emergency teams who arrived in answer to the 911 call her mother placed. In the 7 minutes it took for the team to arrive, Katie's eyes dilated and temporarily made her lose her vision, at one point her hearing was also compromised. Her breathing was erratic and her heart was racing. She had every symptom of a child who was about to pass out, but her mother talked her through her breathing, managing to keep her from losing consciousness. As they would come to find out, that may have saved her life. Once the emergency team arrived she was stabilized and seemed almost back to normal, aside from a little mental confusion. Her mother urged them to take Katie by ambulance to the local ER knowing there was more going on than they could see. This moment at home came after many strange symptoms which had plagued 14 year old Katie for several months. Symptoms which had sent her to the ER, and multiple appointments with doctors, with no cause or link between any of the symptoms being found.

Before these strange symptoms, Katie was a normal teenager. She had a summer job, she went to summer camps, played with her 5 siblings, but most of all she spent time singing and playing music. Katie has been singing since the age of 2. Before most kids could speak long sentences, little Katie would memorize 2 and 3 verses of songs to sing and perform for family and friends. At age 8, she sat down at a piano and found she could play by ear with minimal effort. After years of honing that talent as well as learning to read music, Katie had become quite the musician already. She has been known to spend up to 6 hours a day working on her music, filling her home with her beautiful voice while she accompanied herself on the piano. But over the few months leading up to the event at home, Katie had been slowing down a lot. She was no longer playing piano, seemingly exhausted after even just walking over to the instrument. Sudden and frequent episodes, that appeared like panic attacks, had led her parents to pull her out of school to homeschool just days before she would enter the hospital.

After extensive testing by doctors at Children's Hospital in Omaha, they determined Katie was in heart failure, but the cause was her lungs. She was initially diagnosed with Pulmonary Arterial Hypertension, where the large arteries between heart and lungs are constricted, putting great pressure on the heart to make up the difference. When the medical team attempted to treat the condition with medication, Katie took a turn for the worse. This was very unexpected as this disease is known to respond well to prescription treatment. It became apparent that Katie had the much worse, and incurable form of the disease, known as Pulmonary Veno Occlusive Disease or PVOD. In this form of the disease, it is the tiny capillaries that are constricted, and there is no medicinal treatment for this form of the disease. It is terminal, with only one treatment to avoid death, a double lung transplant.

Katie was flown by medical transport from Children's Hospital in Omaha, Nebraska to Texas Children's Hospital in Houston, Texas, one of the few hospitals within a safe distance that would do a lung transplant on a child. They are also one of the few hospitals to have seen patients with this very rare disease. Because Katie's health continued to decline, they went through the evaluation process in the record time of only two days from arrival; before a unanimous yes from all the medical team to proceed with placing Katie on the list for a double lung transplant. She was placed on lung bypass (ECMO) and waited only 10 days before getting a match that was nearly perfect for her, with identical height and weight. While on ECMO she continued to sing for doctors and nurses, putting on a performance with her ukulele only hours before she was taken back for the transplant operation.

The transplant was a success and Katie was singing again within only a few days of the surgery. It has now been several months since the surgery and Katie has returned home to her family's rural farm in a small town in Iowa. The family of 8 (mom, dad and six kids) live in a small house where Katie and her four sisters have previously shared a room, which her parents say is like a sleepover party every night. While the transplant has saved Katie from PVOD, she now has a new set of challenges. When a patient receives a transplant they have to suppress the immune system to avoid rejection of the new organ. So it is no longer safe for Katie to share sleeping space with all of her sisters. Sickness of any kind could be life-threatening to her, and if a sibling is sick she needs a safe space to be where she won't be in such a high risk of exposure. Katie has developed cancer, which adds to both her risk and her acute need for a private sleeping space.

We are trying to raise money to help the family finish an addition to the house which will provide Katie her own bedroom, a safe space where she can continue to regain her health, and work on her music. Thank you to all who donate, and for those whose prayers continue to bless Katie and her family.