Help Calli’s Medical Journey with Cyclic Vomiting

We have started this GoFundMe on behalf of our sister/daughter, Calli, who is a 24-year-old battling a rare and debilitating condition called Cyclic Vomiting Syndrome (CVS). CVS is a rare disorder characterized by recurrent, severe episodes of nausea, vomiting, and abdominal pain that can last days, and often includes a hospital stay. Cyclic Vomiting is related to migraine disorders and is sometimes referred to as abdominal migraine along with genetic and mitochondrial dysfunction. Calli has been enduring the challenges of CVS since she was a child, but the symptoms have become increasingly worse, and she has been hospitalized twice just in October. Her recent stays have also included critically low potassium and dehydration from severe vomiting. She is unable to care for herself during these times. Complicating things further, Calli has a number of other conditions including POTs (postural orthostatic tachycardia) a type of dysautonomia, an autoimmune condition, MCTD with Sojourns, along with several other disorders. Calli also requires a special diet due to histamine intolerance. She no longer drives and is unable to walk long distances, requiring a disability placard for our vehicle.

There are very few specialists that treat CVS or mitochondrial illnesses. However, there is one specifically that studies the genetics of CVS and other related neurological conditions. This doctor is a Yale Pediatric Geneticist, Dr. Richard Boles, who is also licensed in Florida where Calli resides. It was in anticipation of obtaining an appointment with Dr. Boles that she endured an extensive and costly move to Florida. Calli has now been accepted as a new patient with Dr. Boles practice in California through a series of tele-med appointments starting in early January.

Because this disease is thought to be mitochondrial, passed on primarily by the mother, we must assume that her sister Mallory may be affected as well, they share some overlapping diagnosis, and she has been battling chronic illnesses since birth but unfortunately science was not able to help until now. Mallory became fully disabled in 2017. These appointments can potentially benefit Mallory’s health care and outcome as well. We are immensely grateful to have this opportunity, which could benefit our family.

Our goal is to raise $10,000 to assist Calli in covering the medical expenses related to this program and other medical procedures. Time is of the essence as Dr. Boles is a pediatrician and is only licensed for a certain age group. Our first appointment will be January 9, 2024. As she receives his help, we will then transition to a peer consultation with her primary doctor who is more than willing to assist Calli with Dr. Boles’ guidance. Again, we are so grateful for the opportunity and hope to raise the full cost of Calli’s uninsured care. The breakdown of costs that we anticipate are as follows:

New patient appointment, 3 hours - $1400,

Follow-up appointment with DNA interpretation - $1400,

Follow-up appointment $350,

Additional patients (sibling) 50% of the above costs.

DNA testing is approximately $1200 each person.

Peer to Peer costs unknown but will most likely cost $1000 out of pocket.

Calli needs in-home infusions and specialty medications which can sometime alleviate the need for the ER or a hospital admittance, but this care is not covered by her mother’s private insurance which Calli will age out of in a year. We have applied for disability and are obtaining legal counsel and hopefully in the future her insurance will cover infusions. So, until then, she has no way to pay for these viable treatments on her own and her mother is unable to work full time while also caring for Calli. Some medications can be $400 out of pocket and may or may not work. Her in-home infusions are $300 each visit.

We are reaching out to our community to ask for support. Though there is no cure at this time, your contribution, no matter how small, can make a significant difference in Calli's journey toward a healthier, more manageable life. We hope, with more concise help through genetics, we can put her CVS in remission.

How you can help:

1. Donate: Every dollar counts, and your contribution will directly impact Calli’s ability to access the care she desperately needs. Click on the “Donate Now” button to make a secure donation.

2. Share: Spread the word about Calli’s story by sharing this GoFundMe page on your social media platforms, email, and talk with friends and family. Awareness is key, and your efforts can help us reach our goal. CVSA.org is a wealth of information about her condition. Dr. Boles has been a long-standing board member of this organization.

3. Support Calli: Calli is a talented artist and though she is unable to travel or drive, she has a home studio that allows her to continue to create. She has always been artistically gifted and was awarded an art scholarship in Colorado where she furthered her skills and found her own niche. She continued in business education at UCCS but because of her chronic illnesses, she was unable to continue working or attend classes. With an amazing eye for color, Calli has her own website and is focusing on linocut design and prints to help support herself through her own brand, Calli Lane Created. You can visit this site at callicreated.com or view more of her art on both Instagram and Tik-Tok.

Calli’s resilience and humor, even during the worst of times, is inspiring and keeps us going, but she cannot face this battle alone. With your support, we can alleviate the financial burden and empower her to focus on regaining her health.

Thank you for taking the time to read Calli’s story, and for considering a donation to her medical expense fund. Your generosity will make a lasting impact on her life. All monies will go directly to Calli for the cost of her health-care services. We appreciate each one of you. We will keep everyone posted with updates on this journey.

Sincerely,

Mom, Lisa Cash, and sisters Saide Siatta and Mallory Cash