Support for Sarah
Donation protected
The past 12 months have been rough to say the least for Sarah and her family. Despite the diagnosis of Gitelman Syndrome, a rare Kidney disease, with crippling side-effects, Sarah did her best to live a normal life as a vibrant and energetic 39 year old Mom. A devoted Wife, Daughter, Educator, friend and nurturer to everyone.
She worked in the Life Skills Program at the W.G Mallet school, where she had been employed as an Ed Tech for nearly 5 years. With a degree in Early Childhood Education, Her passion was working with special needs children. It also allowed her to work in the same school district their son Carter (born with a Congenital Heart Defect requiring 5 open heart surgeries) attends, making her available for his many medical needs.
In March of 2018, while at work, Sarah became very ill. With uncontrollable abdominal pain, vomiting, fainting and crippling headaches, She was referred to and taken under the care of several different specialists, from Maine to Boston. This forced her to take an unpaid leave of absence from her position with the school. Over the last 6 months, she has undergone countless tests and procedures to diagnose the beast that has taken over her body, and left the family with more questions than answers. Due to the complexity of her condition, those tests have led to several mis-diagnoses.
In June, a combination of studies performed, revealed her to have a condition called “Gastroparesis” (paralysis of the stomach) which is a condition in which the stomach doesn’t have the ability to empty food. Someone with severe Gastroparesis needs to be treated by a gastrointestinal motility specialist, but only a handful of these physicians’ practice in the United States, and out of pocket treatment is extremely costly. Upon further investigation, an ultrasound showed her to have yet another rare disorder called “Celiac Trunk Compression Syndrome” a condition in which the ligament connecting the diaphragm to the spine presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area. This causes symptoms much like a “Heart attack” of the digestive system causing distressful pain, and uncontrollable vomiting.
She was then referred to a Vascular surgeon. While surgery was not what they had hoped for, it was a diagnosis that seemed like forward momentum. Upon consultation, He explained that the surgery is too high risk, very controversial, and that he wouldn’t be willing to perform the surgery. Once again, more false hope.
At the end of her approved leave time and un-armed with a prognosis or treatment plan, Her position at the School was terminated and her medical insurance cancelled. Her scheduled tests (some taking 3 months to get in) were all halted due to her loss of insurance. Losing more than 30 lbs. with an already thin figure, concerns are high. Sarah is awaiting a referral to a more specific Vascular surgeon in Boston for more tests and a second opinion, while doing her best to stay nourished with a costly liquid diet, as a last resort before a feeding tube is placed.
With the dedication of her Husband, Children, Family, friends, and doctors, Her support system is huge but being reduced to only one household income, things have been pretty tough. The family is desperate for answers and with no medical insurance, the monthly out of pocket costs for tests and treatment, medications, travel expenses and everyday living, have exhausted their financial resources.
This campaign has been set up by family and friends in hopes that you will consider helping a selfless family in a time of tremendous need and we can't thank you enough for the support, prayers, advice and kind words.
Organizer and beneficiary
Levi Archer
Organizer
Farmington, ME
Mark Gentle
Beneficiary
