Jenny’s biological dad, Mark, didn’t show any strong signs at first. However, as a child and increasingly as he got older, he was in a great deal of pain. Once Jenny and her sister were born, Mark’s health took a sharp turn and his body began to deteriorate. He was diagnosed with ankylosing spondylitis, Crohn’s, colitis, arthritis, MS, fibromyalgia, and an eye disease that took his sight. “Lights are out, it’s black,” he would say.
He became unable to walk, unable to eat. His main physician, after innumerable exams and tests and prescriptions, said to him, “I think that’s all we can do for you, now.” Mark said, “You have to tell me one more thing before I leave this office for the last time. Is this hereditary? Are my children going to be sick?” The doctor said yes, it’s hereditary. Mark looked at Nicole and said, “Shorty, I am so, so sorry.” The news echoed in their heads on the long drive home.
Nicole, Jenny’s mom, was Mark’s constant caregiver. Their beautiful family of four became a family of three when Mark, who was in unbearable pain and had begun to bleed out his ears, his eyes and his mouth, took his own life, his soul unable to cope anymore with his body’s determination to die.
Nobody saw anything in either daughter… yet.
Nicole remarried, and one day when Jenny was running across the yard, her husband said, “I think there’s something wrong with Jenny, I think she’s hurt.” It was the beginning of a myriad of tests. At fourteen, Jenny often couldn’t walk down the stairs. She was unable to stay at school, unable to stop passing out. She was unable to eat, vomiting constantly. The doctor and specialist appointments were constant, testing for different things, with two to three new diagnoses per year. There were times in the hospital she had so many medications that she was hallucinating, and did not even recognize Nicole. Other times, she was in so much pain, she would ask her mom to stop breathing around her, as the movement of air hurt her skin so badly. Once it became clear she could not go back to school, Jenny lived for Ellen shows, which gave her bursts of laughter and breaks from reality once a day. Home schooling, when she was able, became the norm.
Jenny has been diagnosed, undiagnosed, rediagnosed, and additionally diagnosed with multiple different diseases by multiple doctors. Encephalitis, rheumatoid arthritis, fibromyalgia, ankylosing spondylitis, brain tumors and cysts, three different nervous system disorders, two different eye diseases, Shogrin’s, dysautonomia, depression, post-traumatic stress disorder, anxiety- these are only some of the diseases that Jenny Hamill, 21, has been diagnosed with. She has been tested and treated by a naturopathic doctor in Montreal, at the Health Sciences Centre in Winnipeg, here in Brandon, and has even undergone shock treatment therapy, which was a completely unbearable experience. The most recent additional diagnosis is acute intermittent porphyria, tested for in literally the past few weeks.
Jenny has bad days and ok days. A bad day has Jenny waking up around 7 am, but staying in bed until around 10. She has to take her medication in order to be able to function, but she can’t take it on an empty stomach. Despite being unable to eat, her body will still force her to vomit, which she swallows so that she has something in her stomach to enable her to take her pills. Then she takes her meds, and forces her body to swallow the vomit again as it tries to get rid of the pills she just took. Once the meds have been able to make it into her body, the day depends on the weather. Cold, wet weather bothers her the most, increasing her pain and making it difficult to do even the smallest tasks, while warmer weather allows much more freedom. Some days her sight is better than others; some days she needs assistance to walk. Some days the pain is so great she loses bladder control; others she is able to be outside and go for small walks.
Her doctors have been unable to stop any of these diseases, only treat their symptoms with medication. At most, Jenny has taken over 50 pills in a day; she is currently at 27. Unfortunately, each medication works only for a period of time before her body stops responding to it, which means a new prescription, and always a new side effect, because she always gets the side effects, including the uncommon ones.
These side effects are how she discovered the Mayo Clinic.
When online researching the side effects of one of the newest drugs, there was a write-up of the side effects on the Mayo Clinic website. Jenny began reading about it and asking friends about it. She watched YouTube videos showing incredibly sick families who went to the Mayo Clinic and had their lives turned around. She talked with her mom, Nicole, and they spoke with Jenny’s doctors, some of who had treated Jenny’s dad. The consensus: go. Go to the Mayo Clinic. The doctors, fully supportive, began tests and creating a file for Jenny to take to the Mayo Clinic to try to get some answers and hopefully, God willing, some healing.
This is where Go Fund Me comes in.
The Mayo Clinic is not an inexpensive thing. A minimum of $10,000 USD will be required for Jenny to be tested by the Mayo Clinic doctors, and the costs of any additional tests or treatments can quickly escalate to $30-$50,000 USD. The doctors here have exhausted their tests. They have said that there are tests the Mayo Clinic can do that they are simply not able to get their hands on here, and therefore cannot do for Jenny.
At 21 years old, Jenny does not want to die. She didn’t expect to live this long. She used to tell her mom that she would be a sick kid, would be here for her mom, but she would not live to adulthood. She expected, and was prepared, to die. Before she got sick, she wanted to be an EMT in a firefighter truck, or a doctor- she always wanted to help people.
Now, she needs help, herself.
If you are able to help, even with the smallest donation, we are so, so grateful. Every bit gets us one step closer to the Mayo Clinic, to answers, and to healing. Jenny knows she won’t be able to have biological kids, but she would love to be able to be a mother, or “a really cool aunt”. Her whole life, she has been surrounded by illness- and not just the flu, but debilitating, haunting illness. First her dad, and now herself- and she wants so desperately to have a longer, healthier life. Her family, her friends, her community – they have all come together so many times, and continue to support her, but the resources are limited, and we are now reaching out as far as we can go to try and find people who can help this beautiful girl to fight for answers and healing.
Please, help us get Jenny to the Mayo Clinic. We love her with all our hearts.
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