Finding A Diagnosis for Joseph
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For the last three years I have been trying to look for answers as to why Joseph is experiencing the problems he has which includes mental retardation, motor planning issues, hypotonia, failure of the pituitary axis, and cerebral palsy-like symptoms.
I am raising money to take Joseph to the Hypotonia Center at Johns Hopkins Hospital. I have dragged Joseph around to a multitude of specialists in the Las Vegas area but everyone just scratches their head and tells me they do not know what is wrong with him. We have seen a regular pediatrician, neurologist, pulmonologist, ENT, ophthalmologist (Joseph is blind in his right eye and low vision in his left eye due to Retinopathy Of Prematurity), orthopedist, urologist, endocrinologist and geneticist. This does not even count the other professional people who have been in life like the nutritionist (he cannot eat solid food or drink from a cup), occupational therapist, physical therapist and speech therapist. All of the therapists also have no idea why Joseph is as impaired as he is when his MRI shows a perfectly formed brain and he has a high desire to learn and please others.
At the Hypotonia Center there are specialists there that will look at Joseph and all his symptoms, including the hypotonia, and try to find the cause of his problems.
If Joseph has a metabolic and/or mitochondrial problem (which may the case since his MRI was normal) there are NO specialists in Las Vegas that can treat him. There are NO
doctors at UCLA either. There is a group at UCSD (University of
California San Diego). For me to take him there it will cost the
same. Our insurance would cover it at the out-of-network rate just like
they would Johns Hopkins. The advantage for Johns Hopkins is that they
have the Hypotonia Center. At the Center they look at hypotonia as a
symptom to a disease or syndrome and will evaluate Joseph for over 500
disease/syndromes that may cause hypotonia. This will include metabolic
and mitochondrial issues along with possible genetic problems. The doctors at Johns Hopkins work as a team
of collaborative specialists. There is NO other place where I can get
that for Joseph. This will allow for better diagnosis of
Joseph\'s problem and will enable faster treatment.
Having a metabolic
or mitochondrial issue can significantly shorten the life span of an
individual if they are not properly identified and diagnosed. The good
news is that the diseases that typically kill children while they are
really young tend to do so by the time they are three. The next set of
diseases tend to kill children anywhere between 10 to 20. The good news
about most of the diseases is if they are caught early and the children
are treated they can live into their 50s to 70s.
The money collected will go towards paying our out-of-network co-pays for seeing the doctors at the Hypotonia Center ($1500) along with the cost of any tests that are ordered. The cost of testing could go as high as $5000. I am hoping to keep it in check by getting as much testing done as possible before we go to Johns Hopkins.
To those who read this and are touched by Joseph\'s story please donate to his cause. Just a few dollars will help us reach our goal. We have three months to raise the money for him to go to the Hypotonia Center. I have faith we will make it in time! :D
Any extra money that is donated will go to Miracle Flights.
Miracle Flights for Kids® exists to help families get the care their child so desperately needs, at no cost to them, as many times as required. Miracle Flights for Kids® takes great pride in knowing that nearly 87% of all donations are allocated to helping children get to life-saving care.
Their website is http://www.miracleflights.org/how-we-help/request-a-flight/
Organizer
Michelle Harris
Organizer
Henderson, NV
