Meet Amanda who’s been a caregiver for the past 2 years.
My name is Amanda and i have been a caregiver for almost two years, i care for my daughter Catherine she is 23 months old. Catherine has plasminogen deficiency and it started out with just her eyes being affected with ligneous conjunctivitis that most of the plasminogen deficiency patients have.
Catherine started showing symptoms around three weeks old, she had some lesions in her eye at the time since she was a newborn i thought would have been a blocked tear duct and through a long process ended up finding out that it was little fibrous lesions. The hardest part of taking care of a baby with this disease is all the doctors appointments and having to have people help take care of your family and having to order out for dinner all the time because you've been in clinic for eight hours trying to get infusions you know it takes two hours to get to the doctors office and then when you get there you wait and then they're at their typing screen and then when you get home another two hours later your whole day is gone.
I think the biggest emotional part of it was going from doctor to doctor and having them not know. Hearing the answer 'i don't know, i don't know' when you have questions 'i don't know', i think that was the hardest part that they just didn't have the answers.
I think the biggest thing I've learnt is how to ask the right questions, how to be an advocate for my daughter. I know now that when i go to see a new doctor, because she's had lesions in her lungs, in her eyes, in her nose. So going to a new doctor and knowing more about her disease than they do and them still not listening. So, kind of knowing all of the research and all of that has probably been the thing that I've walked away with the most.
My husband and i are people of faith so we pray a lot, we have a lot of people who are praying for our daughter. I mean that's really the only thing you can do, this is not something that gets better, there is medicine available to help the symptoms but it's not going to go away. I am hopeful because i know that the answer is out there. There is a way to make this manageable and we're very grateful that there is that available and to all the people who have made that a possibility.