Our derm called me the other day asking me to draft a budget for kids with EB that goes beyond the wound care dressings. To be honest, I thought little of it until I made contact with the EB community asking what they believed to be necessities for EB care. Everyone’s first response: ‘a cure’.
In all honesty, I wasnt expecting such an answer. But I digress.
I thought about all my daughter’s needs, and I realised that her needs were muuuuuuch more than that of a non-EB child (that should read ‘a child without EB’ but it didn’t, in my head, fit the flow of the sentence hence it’s worded as it is), and some of the items required may seem like a luxury to most.
The requested budget made me take a step back and look and the bigger picture. It made me think further than her immediate needs and look at things long term.
And so I calculated, and 5 figures turned to 6.
I balked, and was ever so grateful that we get many of our supplies from the hospital.
But more than that, I wondered what happens to those who don’t have as supportive a medical team as ours?
And what about those who constantly have to fight their insurance companies to get all that they require for themselves/their kids.
How do the single parents cope? And those who don’t have a personal nurse/assistant to help with the everyday bandage changes?
This budget has given me much to think about.
Now more than ever, I want to be more careful with how we use our supplies, whilst not compromising on my daughter’s care. Finding this balance is the most difficult of all.
