Meet Mary-Ella Majetich. She’s the mother to a son with a rare disease and a Give an Hour ambassador. November is National Family Caregivers Month so it’s timely to ask Mary-Ella to share some of the challenges she experienced and a few tips and lessons learned for other rare-disease caregivers.
In the Beginning
Mary-Ella knew something wasn’t quite right when her third son was born. She said he was a poor feeder and his limbs were floppy. However, at the recommendation of medical staff, she didn’t pursue additional testing because it typically “didn’t reveal anything” and was quite expensive.
By age 4, Mary-Ella’s son was having up to 100 seizures per day and he was diagnosed with epilepsy. By age 5 or 6, his seizures were somewhat under control with medication. But … She learned he was not afflicted with only epilepsy — but no one knew exactly what was going on. According to Mary-Ella, one of the most challenging things is knowing something is wrong with your child and not knowing what it is or how to treat it.
When her son was 15 years old, they finally received a diagnosis of Mitochondrial Encephalopathy, Lactic Acidosis and Stroke-like episodes, or MELAS syndrome, which is a rare disorder that begins in childhood, usually between 2 and 15 years of age and mostly affects the nervous system and muscles. While glad to finally have a diagnosis for her son, Mary-Ella knew that some parents never have the same relief because the science “just isn’t there yet.”
Looking back, Mary-Ella said there are a few things she’d do differently.
Share Your Loved One
Mary-Ella was so focused on being the caregiver her son needed, she didn’t realize she was depriving others from spending time with him and getting to know him. She felt like she “loved him more” and was the only one who really could take care of him. A friend, who is a nurse, convinced her that others also were capable of helping him. Mary-Ella realized later the way she was coping wasn’t fair to her son or to herself, for that matter. Allowing him to get to know others and vice versa was healthy for him and also would give Mary-Ella time for a little self-care.
Self-Care
Mary-Ella stresses just because someone isn’t going through the same thing as you doesn’t mean the two of you can’t connect. Surround yourself with those who have a willing ear and can empathize. Finding the right connection with others is much more important than aligning yourself with someone who checks off a particular box.
Support Groups
Find a support group that works for you. In Mary-Ella’s experience, there was a bit of competition in support groups and parents trying to one-up others with whose child has it worse, which really wasn’t helpful. In the case of rare-disease caregivers, especially those who may not have a diagnosis yet, there were instances of survivor’s guilt when someone’s child would die and feelings of “what if this happens to us?”
Go With Your Gut
Mary-Ella considers parents to be the last “vital sign” that should be checked because it’s equally important as all the other vital signs. As a caregiver, you live with the disease day in and day out and are acutely aware of changes, side effects and anything else that might be affecting your loved one and your observations shouldn’t be discounted. In hindsight, Mary-Ella wishes she had pursued additional testing when her son was born.
Life Lessons
Throughout her journey, Mary-Ella learned a great deal as she became her son’s greatest advocate. Does she have a few regrets? Of course. But most of all, there are life lessons she learned that she is happy to pass on if they will help another family.
Mary-Ella stresses that caregivers should be mindful of the things they share – especially on social media. “Think twice before you share things about your child’s condition,” she said. “Because they grow up and one day they are not going to want certain information available for public consumption.”
A young adult now, Mary-Ella’s son (you’ll notice we haven’t used his name out of respect for his privacy) is doing well. He graduated high school (something they were told would never happen), has a full-time job and is married. “He’s much more high-functioning than anyone thought he would be,” she said.
Finally, while Mary-Ella wholeheartedly believes connecting with others and finding your tribe are important, she also said caregivers shouldn’t feel like they need to or must share information about their loved one’s condition. She said, “You don’t owe anyone an explanation.”
* If you are interested in learning more about Give an Hour’s support of Rare Disease Caregivers, please contact Sonja at schapman@giveanhour.org.
