Joao Pedro
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Dear Father,
My name is Daniele, and I have been married for 7 years to my husband
Murilo, with whom I have had 4 children: Joao Pedro (age 4), Catharina
(age 3), and a twin couple Beatrice and Thiago (3 months old). We have
been living in the US for the past 2 years, as a relocation request
from my husband’s employer.
Back in Brazil, I used to work as a Medical Doctor in the field of
Radiology, and by the 3rd month of my first pregnancy, we discovered
that my unborn son had an uncommon condition called 'Occipital
Encephalocele'. The diagnostic is a partial cerebral development,
originated by an incomplete formation of the skull. This pathology is
extremely rare and serious, leading to the death of the fetus during
the gestation in 97% of the cases. Amongst the children who are
eventually born, the majority pass away within the first 3 months of
age.
As we learned about the situation, the only thing left for us was to
put in practice what we’ve learned from our parents: to trust
our lives to God and the Holy Mary, and let God guide us – after
all he is our father and his love for us is greater than our own. I
had an exceptional pregnancy, and despite of the uncertainties related
to our son’s condition, God supported us all the time, and hence
we have never lacked peace and happiness.
My son was eventually born. During his 1st year, he went through 3
neurological surgeries, and almost left us twice. Nevertheless, God
with his unconditional love and forgiveness has spared us from this
suffering. During this period I had to stop working, in order to
accompany my son during his hospitalizations, consultations, and
therapies. Since the age of 3 months, Joao Pedro has been through
therapies for mental and physical stimulation (physiotherapy,
occupational therapy, and speech therapy).
Since our move to the US, Joao Pedro has been improving progressively.
Nowadays despite of not speaking, I am certain that he understands
everything we say to him. He has shown greater interest in everything
surrounding him, has become physically stronger, and above all
happier, all due to a better infrastructure offered in the US for
'challenged' individuals, as well as schools prepared to support him
– unlike what we had in Brazil. On the other hand, while living
back in Brazil, our financial condition allowed us to afford all of
the necessary treatments. However, after moving to the US, as I am no
longer able to work in my field, since for my revalidation I would
have to do an internship and residence again, what would take me
at least five years of full dedication - something that nowadays
is impossible for me since I need to nurture and educate 4
children. Thus, unfortunatelly, we have been unable to bear all
expenses associated with the necessary therapies and by not being
an American citizen, Joao Pedro is not eligible for Medicaid help.
Because we have much faith in Lord and hope that our son is going to
get better and better each day, and knowing his brain injury condition
requires intensive stimuli, I always keep an eye open on newspapers,
magazines and medical information about effective therapies for
special children. That's how I found 'Therapies 4 Kids', where the
therapy is based on an intensive stimulation with exercises to improve
muscular tone and with a special suit, which was developed by a NASA's
engineer, provides the child with the capability to support his own
body and possibly craw or even walk! As it appeared to us as a
promissing therapy, since January 2008 Joao Pedro has started an
intensive 5-week therapy program (3 hours a day, 4 times a week),
which we’ve paid with the remainder of the savings we had left
in Brazil. The treatment is very expensive at the rate of $120 USD per
hour, but clearly effective, as I have never before experienced my
son’s current level of progress, motivation, and happiness. Over
this last month he has began being able to crawl and stand-up by
himself! It's impossible to describe how happy all our
family are about all his improvements and how surprised we are because
it was so fast! My son developed a very strong relationship with his
therapist and even when feeling tired he makes an amazing effort
to do all the exercises and by the end he keeps smiling! I've never
seem anyone who was able to involve my son in such a way that he gets
so motivated to do even boring exercises without arguing. This week
I'm really sad because it's the last days Joao will go to intensive
therapy and, unfortunatelly, we can't afford any more therapy
sessions. I would love to be able to proceed with this therapy for at
least twice a week (total 6 hour per week), as throughout his life
this has been the treatment that showed the best results. Besides
there are some other therapies (like speech therapy and occupational
therapy) that he should be doing but he isn't because we can't bear
that.
I don't want to bother you with my history, but I really need
some financial help to help my son and I know that all we wish for his
future will be easily achieved if he could use all the infrastructure
the US offers. That's the main reason we left all our family back in
Brazil and stayed here knowing that here his abilities could be
best explored. To tell you the truth I don't know what my son will be
able to do, for example, in 10 years; I don't know what goals he will
achieve, I just know that the most important thing is his happiness,
peace and knowledge of the love of the Lord. As a mom, however, I have
to know that I gave him all the best he could have, all the best I
could give... and all above is Lord's grace.
Thankfully,
Ms. Daniele Favaro Cardoso