Rachel Scott Medical Diagnosis Fund

Let me introduce you to Rachel, 23 (now almost 25) years old. Time has passed and it is 2022 and Rachel is now 30 years old. Rachel has been the love of our lives and our daughter since my husband and I adopted her from Romania in 2002 at the age of 10. She's overcome so much in her young life, learning a new language, starting over in school, facing learning difficulties, and leaving everything familiar to her. Her love for her family is very profound. She is a precious spirit who would help anybody in need and will go out of her way to help anyone with anything.  She tries to be as independent as possible, but she is only able to work part time at minimum wage due to her excruciating pain. Her medical bills have become absolutely overwhelming to her, and it seems that the doctor visits never end!

Rachel was a normal vivacious young girl until about 8 years ago when the pain started in her knee when she was a junior in High School. She became limited by the pain and we began to take her to multiple physicians, physical therapy treatments, chiropractic and orthopedic specialists and even took her four times to do experimental treatments in Boulder, Colorado with an orthopedic specialist for her pain.  The pain began to spread to other areas including her spine. No one up to July of 2015 clearly understood what might be wrong with her those years. Only the physician in Boulder helped with pain, and those treatments were all out of pocket. With no medical history available, the physicians were stumped, and time after time we heard "I don't know what else I can do."

They first thought that Rachel has a genetic mutation, a rare, incurable condition called Fibrous Dysplasia. This disease infiltrates the bones and creates a fibrous tumor (lesions) that will never go away, and as it constantly grows it replaces healthy bone. The bones eventually become unstable and may break easily, especially the long weight bearing bones. Her tumors are in multiple bones of her body, and each of them hurt tremendously and the only time she has pain relief is when she is lying down, making air travel (waiting, sitting in the airport and small airline seats) to the physican 6 hours from us in Dallas, almost impossible.  

We sent her records to the NIH and they now don't think she has Fibrous Dysplasia.  

The condition Rachel has is beyond the expertise of any doctors in Amarillo, Tx., although she has an amazing physician at Harrington Cancer Center that has done everything he knows to do for her. An emergency in the summer of 2015 led her to the hospital, revealed this condition on scans.  We were all shocked and heartbroken. We have been working towards a diagnosis and this trip will finally confirm everything. After her summer hospitalization, she was immediately sent to an expert in bone mineralization at UT Southwestern Medical Center in Dallas. When we travel to Dallas they will also rule out another very serious disease that we pray she does not have. She will have multiple radiological tests, multiple bone and marrow biopsies, pain injections into the bone sites, scans, blood work, xrays and exams. It will be grueling for her. We will need to drive there and place her in the back seat of the car laying down. We may possibly need to fly her home alone and mom drive back too, we just don't know yet.

We recently were hit by a truck, and our car was totaled. We've been out major funds to get a new reliable vehicle, so our finances are completely tapped. Rachel's father has to remain in Amarillo to care for his elderly mother in her home, so he cannot travel with us for support and our family has been separated by this situation for months.

Our insurance starts a new cycle in January and will not roll over easing the large deductible to cover any of this. One of the tests is considered experimental and will not be covered by insurance. She has medicine that costs several hundred dollars a month that is not covered on her insurance. Additionally we will need to stay in Dallas for at least a week at a time and return over and over as she has these tests, does follow ups and recovers. We anticipate our expenses in Dallas to be at least $1000 plus each trip plus possible rental of a wheel chair (a dear friend loaned us one, thank you Marilyn Williams) and unknown medical expenses due to the experimental nature of the MR Neurography test she is having. Rachel and mom both will not be working during these visits to Dallas.  

Over the past three years she's had many procedures that were not covered at all by medical insurance. Thousands of dollars of tests and dozens of injections and desperate procedures.

It is becoming increasingly difficult for Rachel to do normal things such as working, shopping, cleaning, and just hanging out with her beloved friends. The pain medication only touches her pain for about 30 minutes at a time. She is too small for strong pain medications and a medical condition prevents her from taking many of the possibly effective ones.

You can read more about Rachel at the Amarillo College disAbility website: Rachel's Story , where she was chosen student of the month. She cannot attend school currently but would love to get back to her studies!

We are asking you to seek your hearts for even the smallest donation, that will allow us to make this trip and then we will need help to continue to make trips take her to the only experts that we can find nearest our home that understand her extremely serious condition.

It is hard for both of us to ask like this but I know we have amazing friends and family and know also that there are special angels out there.

We thank God for all of you and if you cannot donate, please keep Rachel and her situation in your prayers. We are so thankful to join you also in prayer!

Thank you and may God bless you and your family!

 ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ ❤️ 

Lori and Rachel Scott