Meet Amy who’s been a caregiver for the past 2 years.
My name is Amy Steele, i am the mother of Raegan who is now 6, i have been her caregiver for a little over 2 years since she was diagnosed with plasminogen deficiency. Raegan started with pink eye in August of 2015, what we thought was just regular pink eye and it just continued to not clear up and not clear up.
I had done a little bit of research, some of those articles talked about morbidity and mortality rates and as a mum i just had i guess what you would call a panic attack, i felt like i couldn't catch my breath and the world was sort of spinning because immediately like i said all i saw was morbidity and mortality rates and i thought what if there's something going on internally and i don't know about it- just kind of this overall feeling of helplessness but what we were on was the best treatment at the time which i mean it didn't fix anything, it helped slow the progression of it getting worse.
At one point our life just felt like it was scheduled around doctors appointments and picking prescriptions up and timing of when we're giving her medications and so on and so forth. I had some guilt as a mum who worked full time in that i couldn't just stay home with her to make sure that everything was taken care of and her medicine was given to her timely. I had to really rely on the caregivers at her daycare to make sure that the drops got put in timely because if they didn't put in in time then it pushed back our schedule at home and everything just kind of revolved around Raegan's medication schedule and then doctors appointments and trying to fit everything else in as a busy family with two kids- that was kind of difficult.
Perseverance is important, you cant just sit down and say 'well okay- you know, that's what they told me'. I think you have to keep pushing and pushing and looking and asking those questions and in a way not accept no for an answer.
You also know, you have to be patient and i finally had to accept that this is our new normal and this is what it's going to be and i couldn't think about how it was in the past or what we're going to do in the future. This is just the new normal and we've just go to adapt and adjust and have some sort of normalcy to our lives or it's just going to make that even much harder.
So maybe adaptability, you just have to, you have to to survive. I think what gives me hope is that i know there is a lot of research being done . I know there is a focus on trying to find an answer and the awareness seems to be increasing and i think the more of us that come forward and keep looking for those answers that we'll find the treatment that they need.