#charlotteneedsbelievers -one story, two sisters

This is our hardest update we have shared about #charlotteneedsbelievers. Our financial challenges are exhausting and relentlessly demanding. Charlotte's ongoing care for the past two years, followed by our whole family moving across the country to South Carolina to save her life has created tremendous physical, mental and financial suffering. After moving, we needed to find a place to live and reestablish employment, all while her medical expenses continued to grow as well as personal bills piling up. Now we’ve found out that our middle child, Penelope, has medical conditions which will require her to have ongoing medical attention - we are heartbroken. Both children require a private PPO insurance plan which costs $1,000 each month for them to continue to see their specialists who understand their conditions. The medical demands are ongoing for both of them with continued tests, trial treatments, follow-up appointments, distance travel, loss of wages, and out of pocket medical supplies and prescriptions not covered by the cost prohibitive insurance. As parents, we just want to wake up from this nightmare and have clear answers to improve our children's quality of life, enabling them to have a normal childhood, to live with no limitations and be pain free. Any amount you can spare to help ensure the overall best outcome in their current and long-term care we are so grateful for.

It all started two years ago. Looking back two years ago when our daughter Charlotte first became sick, her body was basically starving at six years old. She experienced daily abdominal pain every time she ate or drank, and she had ongoing progressive neurological symptoms. Her severe pain level prompted many ER visits and 911 calls because she physically couldn’t move her body - it was in fight or flight mode. Her quality of life depended on medical providers believing her symptoms and rare conditions. Charlotte is now eight years old and after fighting for her life she receives her nutrition by a NJ feeding tube and requires the use of a wheelchair for distances outside her home. She has a positive demeanor and strong faith while still encountering providers today who quickly dismiss and downplay her symptoms or worse, have contacted child protective services falsely accusing her mother of Munchausen by Proxy.

False accusations against us. Once Charlotte became sick, she quickly stopped growing and the daily pains she experienced when she ate dragged on. We would feed her anything she could tolerate and many times she would lick a spoonful of peanut butter just to keep her sugar level up. We continued to follow every medication trial, treatment and care plan given by her Wisconsin medical team, but nothing was working. We saw a specialist who advised her local Wisconsin medical team the need she had for them to place a NJ feeding tube - but her local Wisconsin medical team refused the specialist’s recommendations. There were many nights she would cry out because she was so hungry and couldn't fall asleep. We would switch off feeding her as you would an infant, very small portions, frequently all day long. She would go to school exhausted from restless sleep and at lunch time we would drop off a nutrition dense shake for her to lie on the floor and drink because she couldn't eat like other children her age without experiencing abdominal pain. Months later, we found out a private meeting was held by her Wisconsin medical team as they discussed again accusing her mother of Munchausen by Proxy and the Wisconsin medical team mutually agreed to no longer communicate with Charlotte's outside specialist regarding her care plan. We were reporting our child's symptoms and advocating for her care as we watched her suffer daily only to have Child Protective Services enter our home as medical providers quickly prequalified our intents and did not have the patient clinical experience for the conditions Charlotte would later be diagnosed with.

Moving across the country to avoid starvation. Charlotte's health was rapidly declining. We were left with no choice but to move across the country in order for Charlotte to receive a NJ feeding tube which was placed by her South Carolina care team to avoid starvation. This move was eleven months ago - when we had to leave our family, friends, children's school, and our home. We were only able to move the bare minimum and did our best selling any belongings to cover moving expenses. In Wisconsin, we had an established contractor business which we operated together, Jesse as Project Manager and Calli running the office operations. Our many, long-term clients were not only friendships we had to leave behind but our family’s main source of income. When our daughter was at the verge of starvation, we knew it was needed even at the cost of losing every financial safety net we had.

Now living in South Carolina. Charlotte has an established medical team and specialists who believe her and have properly diagnosed her conditions. Charlotte has been diagnosed with Tethered Cord Syndrome (TCS), Chiari Malformation (CM), Craniocervical Instability (CCI), Ehlers-Danlos Syndrome (EDS), Superior Mesenteric Artery Syndrome (SMAS), and Biliary Dyskinesia. Specialists have noted abnormalities on her medical images to warrant further investigation of other abdominal vascular compressions. She also has elevated mast cells which gives a working diagnosis for possible Mast Cell Activation Syndrome (MCAS). Due to her continued bilateral calf pain, she has an ongoing working diagnosis of Compartment Syndrome by Shriners Hospital vs. nerve damage from delay intervention for her Tethered Cord Syndrome.

Penelope's diagnosis we were never prepared to hear. Over the past two years we have learned a lot and Charlotte's medical team has gained patient clinical experience. Never did we think this would be used to pick-up on keen symptoms and for medical providers to believe our middle daughter, Penelope. Penelope, five years old, has just been diagnosed with Tethered Cord Syndrome and has been seen by a geneticist who notes her to be hypermobile and will continue to follow her for concerns of potential Ehlers-Danlos Syndrome. Penelope had a neuropathic genetic panel which revealed a gene with an unknown variant and her medical team is conversing if further genetic testing could be helpful. Tethered Cord Syndrome is genetic, and their South Carolina medical team has informed us they are mindfully aware we also have a third child who is just two years old.

Share their story and care for even the rare. A quarter of Charlotte's life has been surrounded by her medical conditions and now we are told Penelope has a high probability for surgery in the upcoming months. This surgery would require out of state travel and loss of wages for weeks as Penelope needs to stay close to the hospital to manage her post op care. We are broken by this ever-evolving news and truly wonder when this nightmare will end. It is so important that you share #charlotteneedsbelievers story because when another family's child finds a medical provider to believe them it's immeasurable. We ask you to please share #charlotteneedsbelievers, one story, two siblings to improve their life and show care for even the rare.

With love,

Jesse & Calli