We LOVE our homeland. Yes, many people are VERY anoying, but we LOVE our homeland. I LOVE my little island of wonders and enchantment. I want to go back, so we can have a choice in our everyday life when it comes to having fun, leisure... beaches, forests, caverns... You name it, we have it. At an easy reach. Friends and family are there, good and bad... but they are there. We are tired and jaded and we really need to see familiar faces, and maybe even get into a familiar routine but more into our own 'coqui' tunes...
This weekend we realized we can't go back. Not a realization... Well, it is something that was in the back of our heads, and we were trying to accomodate, and make true... But we knew better, we had hypothesis of how we could cope, how we could make things happen... We have many plans, A-B-C, all leading towards our surprising and triumphant return. We were proven wrong. Everything collapsed.
During the weekend i was contacted by another SMA family, it was peculiar that they were from PR, and they are still there. They have a boy that has a tracheostomy, and for whom they are literally "pasando el Niagara en bicicleta". At least they accomplished one important thing: They took the kid to Santo Domingo and did phase 1 of a stem cells treatment (they are 3 phases). That was no easy task, as each treatment's phase is $30,000, out of pocket, as no insurance covers it. And they began witnessing the fast improvements in their kid thanks to the risk they took. This is uplifting and brings much needed hope.
Now, to the bad part of the story...
PR and it's stupid political/economical/health system. They have the same insurance I did when I worked in the government agency... They must pay deductible of 20% that makes monthly expenses reach $3,5000(equipment, mandatory maintenance supplies, special food, etc). Think about it... In my not so perfect job I earned $2500... which paid all debts leaving just $50 in my bank account. Yes, I foresee our situation really well... Forcing the kid off the plan so la Reforma covers it cuts all services in half, as la Reforma is not accepted everywhere and doesn't cover EVERYTHING. Right now if we go back, Deedee would have to go with it as no insurance will allow her in the plan because of SMA being a fatal congenital illness...
Plus there are NO doctors seeing these kids. The only pulmonologist involved with them is trying not to see them so he pushes the Health department to do something... Gee, that solves everything... Health department don't care about 300 expendable kids on vents. Service providers literally don't have a heart, and if you don't pay they take everything away (thus the cases of dead kids...).
Living off the system won't help either as you would be forced to keep the kid under the very basics, reusing all stuff you are supposed to dispose of, making the food last by thinning it... you name it. And we are talking helping the kid survive... If Deedee has no tracheostomy when we go back, at the first emergency they will do one. PR don't want to handle NIV (non-invasive) even if proof of its benefits is there. And it is funny, because they dont handle well kids with tracheostomy (most end up in eternal hospital stays, getting medicines given by nurses and not seeing by the doctors that prescribes them...)... Until they die.
And SSI seems to be a distant alternative for us too. We have it here, I wonder if they would take it away because they don't want to give it in the island. Disturbing, as last year if you read Social Security notices, SSI is mandatory and of fast processing when fatal cases come into play, and SMA is listed on those exceptional cases. But you must belong to a state... And PR is a commonwealth... Funny, because I know some people get SSI. It is all selective aid.
So... until there is Medicaid, a respiratory center, doctors willing to have these kids in their offices, an ER willing to work with NIV and emphatic medical supply business... there is no going back. No salty weather... no blissful wind... no mango trees... no winter sun... Because Deedee must be there, must live and grow... Must have a true chance... And who knows, maybe even the stem cells will work a miracle if they are finally made accessible... They work with Cerebral Palsy. Hopefully they will work with SMA. And so we must stay until then...
Now what.
10-4
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