Doherty Family Medical Care

After 7 years of dealing with staggering medical expenses and unrelenting medical travel for dozens of surgeries, my sister, Elke Fein Doherty, and her family, need some financial help.  A year and a half ago, Elke had to stop working in order to be a full-time caregiver. 

We have set up a GoFundMe account to help them to pay off medical bills; fund needed medical care which is often out-of-pocket, out-of-state and out-of-network; and make their home more accessible.

Christina & Elke spend much of their time and resources attempting to help others in the chronic illness community.  They would greatly appreciate your help at this time.

Medical details

Both of their girls, Christina and Lauren, have a “rare”, genetic, chronic, complex, multi-systemic condition with many associated conditions, including:

·         Ehlers Danlos Syndrome hypermobility type (Connective Tissue disorder),

·         Chiari Malformation (herniation of the brain stem),

·         Tethered Cord Syndrome (attachment at base of spinal cord causing abnormal stretching of the cord/neurological problems),

·         Spinal Instability,

·         Idiopathic Intracranial Hypertension,

·         Dysautonomia/POTS,

·         Mast Cell Activation Syndrome,

·         Adrenal Insufficiency,

·         Gastroperesis,

·         GERD,

·         TMJ,

·         Sleep Apnea,

·         Endometriosis.

At this time, Christina is living with

·         a full spinal fusion to help with spinal instability,

·         a feeding tube due to swallowing & allergy/immunology issues,

·         a stent in her jugular vein for venous stenosis (veins in brain collapsing),

·         a lumboatrial shunt to help her body deal with intracranial hypertension (cerebral spinal fluid pressure too high on her brain),

·         a port-a-cath in her chest for IV saline treatments at home to avoid daily fainting caused by POTS/Dysautonomia, and

·         numerous braces/splints to help support her body’s fragile connective tissue.

·         A wheelchair for mobility,

·         Chronic pain and medical challenges. 

 

Lauren is dealing with pain from joints which dislocate/sublux daily, POTS, G/I dysfunction, Mast Cell Activation Syndrome and Tethered Cord Syndrome.  She will have her first spinal surgery in January.

Although awareness/education is growing about these conditions, medical care is still a major challenge.  The reality involves out-of- state, out-of-network and out-of-pocket providers and expenses.  Since this condition affects every part of the body, patients have to see a long list of specialists such as Neurosurgery, Neurovascularsurgery, Neurology, Cardiology, Hematology, Physical Therapy, Gastroenterology, Nutrition, Pain management, Allergy/Immunology, Endocrinology, Sleep/Pulmonology, Gynecology, TMJ/oral, Vision, Audiology, ENT, Orthopedic, Orthotist (brace makers) and on and on.  Medical appointments are almost every day to manage ongoing and new issues. Since very few doctors understand these conditions, finding the right specialists is critical.  There are no clinics which provide the whole team.  Medical travel is inevitable. Through internet research and connecting with other patients via social media, the patient and family are left to navigate this very difficult condition on their own.  Many doctors are uninformed, unhelpful and can be hostile.  Many are very quick to diagnose patients as having a psychological disorder or drug-seeking for their pain

Checks should be payable to Doherty Family Medical Care:
Northern Bank
303 Main Street
Woburn, MA 01801

Thank you for prayers and and financial support you can contribute! Happy Holidays to all!
Susie and the Fein Family