Need Funds

We are in the early stages of looking at post high school alternatives and it is a real challenge to navigate the labyrinth of schools available to young adults with learning and physical disabilities.  Many schools offer programs that assist individuals with a learning disability, but there are very few programs that offer assisted living as well as specialized educational programs.  Many of the programs are designed for kids with ADHD, dyslexia, social issues, autism, etc. and the kids must be independent.  Understandably, there are no programs designed for individuals following hemispherectomy surgery.  Many colleges offer some type of special education accommodations, but they are limited such as arranging for additional time on tests, providing e-readers, and additional hours for help, but they will not tailor their programs to individuals that learn differently that require customized curriculums.  It is important that you understand your child’s learning issues when evaluating programs.  There are various categories of intelligence used to evaluate one’s ability to achieve: reading fluency, calculation, passage comprehension, writing fluency, calculation, applied problems, math fluency, working memory, visual memory, design memory, to name a few.  There are different tests available to gauge the range of achievement abilities, the Woodcock Johnson Achievement Test and the Wechsler Adult Intelligence Test are common ones.        

I received these two e-mails during the Thanksgiving week.

I am emailing you as a starting point in my endeavours to help a young RE sufferer who lives in Guatemala. My husband and I visited our Guatemalan family earlier this year and had the pleasure of meeting this very honorable family doing life so tough! It was heartbreaking to see and realise the on-going struggle they face in the care for their daughter.  Whether the treatment she is receiving is now appropriate – I don’t know! Is she on the right medication – Her father speaks some English and works in IT, but her mother,  speaks only Spanish. I have been researching on the internet for many hours, and I am hoping that you may be able to help us. I have found websites where people can apply for medicines at a cheaper rate, but they all seem to say for US Residents only.  Due to increased concern for their daughter’s deteriorating condition, they are currently managing to pay for some much needed physical therapy.  However, while they are certainly witnessing the benefits of this therapy, both physically and mentally, they are very uncertain as to how they are going to keep paying for these sessions next year. The father is also very worried about the possibility that he may lose his job next year which would be absolutely disastrous. The family needs help, both emotionally and financially. We don’t know of any other RE case in Guatemala, so it puts them in a very isolated situation. I can only imagine the heartache and difficulties that you and other parents face in dealing with this horrible disease.  Look forward to hearing back from you with any suggestions or advice.

_________________________

My 8 year old daughter has Rasmussen’s  encephalitis. In her case, it’s in both hemispheres.  Currently, she receives IVIG  infusion  every 4 weeks.  Are we alone or does anyone else have in both hemispheres?  Do you have any info that I could give to our neurologist concerning any treatments, research, etc?  Would appreciate  any help.  

Please consider donating to the RE Children’s Project during the holiday season.  We relive our own personal difficulties every time we receive one of these e-mails.  Without additional funding the RE Children’s Project will no longer be able support research into RE as well as help out these families.  Our funding reserves are now low and without your support we will cease our research program.  We need a non-invasive treatment for this disease, the hemispherectomy surgery is not the answer.

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