Analyss is a beautiful and special little girl. She is 7 yrs old now and has endured so much at such a young age. However, no matter the circumstances she continues to smile the biggest smile she can, laughing the cutest laugh ever and is just so kind and loving to everyone she knows. Analyss may be small, but she continues to be strong; conquering all obstacles that come her way.
Analyss was born with a rare syndrome known as, Jarcho-Levin Syndrome. She remained in the NICU at Winnie Palmer Hospital from birth until she was 5 months old. She was able to go home with a trach, on a ventilatior with oxygen, a feeding pump and many other medical machines and supplies. It definetly wasnt easy, there were good days and there were bad days, however, we were able to overcome and surpass it all.
When Analyss was 4 yrs old we recieved the amazing news that Analyss would be getting decanulated. We were admitted into Arnold Palmer Hospital to have the procedure done and all went well inside the O.R. , although as months went by we noticed that her trach site wasnt closing. We returned a 2nd time to have the trach site closed but her ENT wasnt able to complete the procedure due to complications that were found, so the site will remain open until Analyss is older and stronger. However that would just be one of the many bumps in the road that we would be encountering.
Analyss has been recently seen by a neurologist as well and has been diagnosed with Autism on top of having Jarcho-Levin Syndrome. She was also seeing a neurologist because she had been getting really bad headaches on and off this past year, but these past 5 months they have been worse. Analyss would get these headaches that would come out of no where and she would just drop to the floor screaming and crying, holding her head and closing her eyes because the pain was just too much. She had a CT scan done of her brain and then had to follow up with a neurosurgeon who requested an MRI to be done. The results came back and Analyss's 3rd ventricle in the brain is enlarged, causing a lot of pressure in the brain which is the reason for her headaches. The neurosurgeon would like to have a lumbar puncture done as well as perform an Endoscopic third ventriculostomy which is to create an opening of the third ventricle so that the cerebrospinal fluid can flow like it should releasing the pressure of the brain, to hopefully cause less headaches and if that doesnt work to then proceed with a brain shunt.
However, before we jump into any more procedures and start Analyss on any other RX medications we would like for her to see a doctor who is located in Longwood that specializes in Integrative medicine. This docotor along with his team will be working with Analyss in creating a plan that can help her improve in all the following areas: increase of appetite, help her improve in her autistic areas, and can also treat her headaches. We would like for her to start treatment as soon as possible but her insurance does not cover the cost and we would have to pay out of pocket for the treatment plan, special diet, therapy and supplements to start her on this natural, healthy journey. We will greatly appreciate anyone who will be willing to help donate.
- Nancy Chacón
- Omar A. Santiago
- Fabian Rivera
- Alberto Bonilla Montalvo
Organizer and beneficiary
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