Caitlin's Cavalry - home repairs

Please help Caitlin’s Cavalry paint and make repairs to Caitlin’s family home. The homeowner’s association is potentially threatening a lien on the property.

Despite the months of doctors’ appointments, and dozens of phone calls with doctors, insurance, and hospitals, Jennifer and Caitlin are coping with school and work. They are both continuing to meet their respective deadlines on school work and editing.

Meanwhile their home needs repair. Jennifer received a letter from the homeowner’s association regarding upkeep on her house. Last summer, she rebuilt her fence on her own! She started working on the painting of the house by replacing rotten wood, caulking and priming her repairs. When she realized that she could not safely reach the second story, she stopped. Jennifer got a bid for $10,000 to repaint the house and she knew she needed to start saving. She had been stockpiling cash when the bills from Caitlin’s care started to arrive. Unfortunately, the house painting money is depleted, but the homeowner’s association is threatening to place a lien on Jennifer’s home if she doesn’t fix the house. Jennifer prides herself on excellent credit and paying her own way. She is resilient to the core and hates asking for help. Jennifer’s friends have convinced her that this is an extraordinary situation and that she is not a slacker! Caitlin’s diagnosis and medical bills would be difficult for any family to handle.

Please donate what you can to help Jennifer paint her house, replace two outside doors that are rotting, and a kitchen window alcove that is threatening to collapse due to rotten support beams.

For those of you new to Caitlin’s Cavalry, please read below to gain more understanding of what this family has endured the last three years; with the financial and emotional stress increasing these last five months.

Caitlin is a smart, funny, and compassionate 12-year-old girl who loves animals, going to school, baking, DIY projects, and visiting historical sites. Her mom, Jennifer, is a single mom of two, that is an English tutor who juggles multiple editing contracts constantly. Jennifer is very good and diligent in her work as an editor and her role as a mom.
About 3 years ago, Caitlin started having confusing health problems. She was tired a lot. Although she had always loved baking and cooking with her mom Jennifer and sister Jessica, she didn’t have much appetite. She had a lot of GI problems and stomachaches. She stopped gaining weight. She had trouble breathing when playing her favorite sports, lacrosse and volleyball. Perplexed and concerned, Jennifer started on a mission to understand what was going on with Caitlin. This started a nearly 3-year journey with several medical specialists and misdiagnoses along the way.
Last month Caitlin was finally diagnosed with Pulmonary Alveolar Proteinosis (PAP). PAP is a lung disease that causes an abnormal accumulation of proteins and lipids in the lungs. As the lungs fill up, people with PAP have difficulty breathing. It places a significant burden on heart functioning to try to get sufficient oxygen to the body. Because the body is working so hard simply to oxygenate, appetite is diminished and there can be significant weight loss. It took nearly 3 years to get an accurate diagnosis because PAP is an extremely rare condition – Seattle Children’s Hospital has told Jennifer that Caitlin is the only child in the entire Pacific Northwest with PAP.
While trying to cope with the diagnosis of a rare, chronic lung disease is challenging, Jennifer and Caitlin are glad to finally have an accurate diagnosis to guide further evaluation and treatment. Caitlin has already had two lung lavages at Seattle Children’s Hospital; this procedure flushes out the excess buildup in the lungs to help her breath better. Each lavage requires an overnight stay and several days of recovery, but Caitlin is already starting to breathe easier for the first time in years. Now Caitlin needs a medicine that costs $ 1989.95 a week! That is after the insurance company paid it’s share; originally the medicine cost was $5000. This is a huge financial strain on the family. They have insurance but it only covers so much.
There is much more Jennifer and Caitlin need to do to understand her PAP and develop a treatment plan for her chronic condition. They are working with pulmonologists and gastroenterologists to understand the relationship between her PAP and her ongoing digestive problems. Since childhood PAP is so rare, they are still trying to understand what treatments are available to and appropriate for Caitlin. Most importantly, since there are no PAP specialists in the Seattle area, they need to travel to Cincinnati Children’s Hospital where most childhood PAP research, evaluation, and treatment is being conducted.
At Cincinnati Children’s Hospital, Caitlin will undergo further testing and evaluation to better understand her PAP. Is it genetic? How is it related to her GI problems? She will also be evaluated for participation in both research studies and clinical treatment trials. Because PAP in children is so rare, Caitlin wants to be able to help scientists understand the disease so they can better diagnose and treat other children. Most importantly, Jennifer and Caitlin want to see if Cincinnati Children’s Hospital can help develop a treatment plan to get her symptoms under control.

If you would like to follow Caitlin’s story, please go to Caitlin’s Cavalry on Facebook and request to join the group.