Service Dog for Scarlet

This is Scarlet. She is OBSESSED with Taylor Swift. She LOVES reading. She lights up every room she walks in. You will rarely see her without a smile on her face. She studies hard and is an incredible student. She is a bright light in the lives of so many people.

What you don't see when you look at her? She is sick. And in need of your help. The short version: Scarlet is having seizures and needs a service dog to help keep her safe.

The long version (and I suggest you stick with it and read the whole thing):

Scarlet is 8 years old and has been suffering from various medical problems for YEARS...

Her medical issues began when she was 4.

In 2021 she was experiencing leg pain. She was evaluated by an orthopedic surgeon who discovered that she had broken bones in both of her feet that had caused her to walk abnormally- this resulted in the shortening of her Achille's tendon and the inability for her to walk with her feet flat on the ground. Scarlet underwent 5 weeks of serial casting- a process where a different cast is put on the legs every week to slowly stretch the Achille's tendon. After she finished the casting, Scarlet wore braces for a long time. When she outgrew the braces, we thought that she was free to be a normal little girl...... wrong.

Scarlet continued to have pain. In December of 2022, she was evaluated by a neurologist who discovered that she had severely decreased sensation in her legs as well as extreme muscle weakness. After a battery of tests, doctors discovered that Scarlett had a tethered spinal cord and a fatty tumor that was compressing her spinal cord. These were causing all of the problems in her legs. Scarlet underwent surgery in April to untether her spinal cord and remove the tumor. Against all odds, Scarlet was up and walking the next day! Less than a month later she participated in a "fun run" at her school. Certainly this had to be the end of this little warrior's medical struggles? Now she could be a normal little girl? Wrong again.

Scarlet continued to see specialist after specialist, trying to figure out the cause of her problems. Trying to treat the other issues that kept popping up.

In August of 2023, people noticed that Scarlet was having trouble hearing. A brain MRI revealed that she had a mass pressing against the nerves running to her eyes and ears. This mass was causing her to lose her hearing and also had the potential to impact her sight.

Up to this point, the list of RARE diagnoses and specialists needed to manage them was extensive:

Osteoarthritis- Rheumatology

Tethered Spinal Cord Syndrome- Neurology, Geneticist

Duplex kidney- Urology, Geneticist

Supernumerary Kidney- Nephrology

Precocious Puberty- Endocrinology

Femoral Anteversion- Orthopedic

She does aquatic therapy 2x a week.

Hearing loss- Audiology

Tinnitus- ENT

Petrous Apex Cholesterol Granuloma- Neurology, Neurotology, Otology, Neurosurgery

But, even with all of these issues, Scarlet continued to go to school. Continued to be an amazing girl. Continued to be brave during all of her tests. Her case was reviewed by the Mayo Clinic who said there was nothing more to do about the mass.

She underwent more testing which revealed that she was experiencing multiple seizures and was started on anti-seizure medications. Even with these medications, Scarlet still suffered from breakthrough seizures and her medications were adjusted. Without finding concrete answers, doctor after doctor said that there was nothing more to do.

Scarlet was evaluated by Cincinnati Children's Hospital in October and it seemed as though there would finally be answers. She was admitted for a full diagnostic workup. They found that the brain mass and the seizures were NOT related. Her seizure medication was increased. The mass in her brain had not grown from previous imaging. The biggest thing pending was the genetic panel that was obtained when she was admitted. However, while waiting for these results to come in, Scarlet suffered from more and more seizures. She was evaluated in the emergency room multiple times. Her medications were adjusted again.

On November 14, 2023, the results of Scarlet's genetic testing came back, and parents got the news that no parent should ever have to hear. Scarlet has a rare disease called Alper's disease. It is a genetic mutation impacting the POLG gene that affects approximately every 1 in 100,000 people. It links all of her issues, everything that you've read up to this point, together. There is no cure. There is no way to slow disease progression. Most people diagnosed with this disease die within their first decade of life. Scarlet's prognosis is bleak. Her loved ones are praying for a miracle.

Scarlet is still receiving treatment for her conditions- especially her seizures. She will be undergoing more genetic testing. If you've stuck with Scarlet's story for this long, I bet you're wondering one thing- what can I do to help? Scarlet is in need of a service dog to help alert everyone to her seizures before they start. This way, the chance of Scarlett getting injured from a seizure is decreased. These dogs are expensive, but one is needed to help ensure that Scarlet is safe. We are asking for donations to assist Scarlet get the service dog she so desperately needs. Thank you for reading, and thank you for whatever support you are able to give!