Main fundraiser photo

Ray-Rays travel & testing cost

Donation protected

https://www.gofundme.com/rayrayfrench In May 2016 our lil dude Ray-Ray had some test done because he quit sleeping except for maybe 2-3 hours a night. We all took shifts staying up with him in between us getting very little to no sleep, other kids, work, and daily tasks it all became very challenging. We became very persistent at his primary doctor something was wrong, or just not normal. No 2 year old we've ever know can function on 2-3 hours of rest a night, stay awake for daycare activities, home swimming and maybe if he would an hour nap a day on top of his 2-3 at night. Finally was given a referal to neurology. Neurologist said something definitely going on so he ordered some lab work, an MRI, see an ENT Dr to get tonsils and adenoids removed hoping that would help the sleep issue. On May 11th he had the surgery to have tonsils and adenoids out, all went well healed nicely thought and hoped things would go back to normal. He started sleeping some better, then the Neurologist called with news that we had to see more doctors his blood work came back abnormal., and it all starts. I sent all labs I could get, all results from Neurologist, MRI and office notes to his primary doctor. As he reviewd them he asked if we could come in the next day for an extended visit to go over them, our options and process. We went in the next day knowing the answers after our research, just needed the confirmation from a doctor that can read, understand, and re-iterate to us in English not doctor terms or lab codes. Even though I personally am in the medical field I still needed to hear it from the Doctor this is really happening to our son. Yet to our surprise he couldn't even get it all. We explained we have done our research to please not beat around the bush just get things rolling. He confirmed that we have came up with the same thing he has through research. A very rare form of Down Syndrome, one of two types of Leukemia. Linked together causes cardiac arrest along with numerous other heart issues, renal failure, insomnia, behavioral issues, learning disabilities, developmental delay, much more. His kidney function is way off not knowing if he has a blockage somewhere, or if output was too high. His blood pressure is higher than most adults 138/92 while sleeping. He had to get into see a Hematologist/Oncologist ASAP. The trouble we run into is we can not find a childrens hospital that has all specialists that he needs to see located in one general area or even remotley close to one another, not to mention any where near us. We have traveled to Tampa All Childrens for Neurology, St. Pete All Childrens for ENT and surgery, Orlando for Hematology/Oncology, and most recently Miami Nicklaus Claus for Genetics specialists. We luckily found a cardiologist in our city to start the testing on his heart then if need be we could transfer to a main hospital once we decided on a location. Much to our surprise all the Childrens Hospitals in Florida are ranked decent in all specialties he needs they are not all in a similar location, out of same organization, or coordinate around other specialists appointments to keep from continously driving 2,3,even 6 hours away on a regular basis. Along this journey of results my mothers health has declined severly. She was diagnosed years ago with COPD, chronic asthma, and Emphysemia. Up until early to mid April she struggled to work daily. It came to an abrupt end when the hot and steamy weather of Florida began. She is now home doing what she can to help still with Ray-Rays restless nights, help trying to maintain house, and monitor her health as well. Ray-Rays father is still battling SSI appeals court for his benefits we have fought for, for over 3 years due to his disabilities that leave him some days fighting and suffering just to get out of bed from the pain caused from Lupus, Rheumatoid arthritis, depression, and severe anxiety, and other issues. I have the only income in the home at this time, unfortunately I work in a Pediatric General Practice office and like most others our hours decline in spring -summer months due to kids being on summer break, families on vacation, less illness spreading. Doesnt help I miss a lot of work to make sure our son gets to each and every appointment necessary. I have a very uderstanding job, boss, co-workers, and supervisors that I am greatful for. I have only been able to work abut 20-25 hours a week at this point between the testing, radiology, Dr appointments (not just for lil man) for entire family, maintaining bills to the best of my ability, gas in my vehicle to get to and from work and appointments, vehicle pmt, insurance, and the list goes on and on as it does for most adults. The gas for vehicle alone is tough, but the lodging when we do drive 5-6 hours away is just as much. Granted there will never be a price on my sons (any of my kids) health. I am just triying to make sure we can get to his appointments and keep him as happy, comfortable, and content as we can. If you are one that personally knows me; me asking for help is a very hard thing to do. I work for things I need and want, there are things that happen that we can't control and have to do whats best for our kids and family. I am not one to have my hand out looking for free things, letting people know our struggle and asking for help takes a lot to get me to do; I usually would go with out or manage to work it in on next pay day. This isnt something that I can push back and try to squeeze in another pay-day.
No one will place an actual diagnosis on him. So far through our research there are 3 kids being studied at University of Michigan Motts Childrens Hospital that have the same thing going on as our lil man. They have never seen anything they could label it with, there are no physical defects, nothing abnormal that would spark concern. He has all of the internal affects of the diseases. The organs, tissue, nervous system and behavior. He has a chromosome 21 abnormality. If anyone has a clue what that means, its linked with a form of Downs Syndrome if you have seen Ray-Ray he has none of the physical characteristics, defects, or abnormalities of the disease. He's smarter than most kids his age: intellectually, comprehension and logic. He was behind in his talking and walking (which we figured since he was 2 months premature) the Neurologist thought that was completely normal for him. He was hyperactive intelligent bored in to EVERYTHING typical 2 year old. Our lil man has been such a trooper through all of this. He has had blood work after blood work, an echo of his heart along with EKG, Ultrasound of kidneys, bladder, and Liver, urine specimens, etc... He is young, resilient and stubborn he will over come this if we can ever get going. This will be our 4th trip around Florida to yet another specialist and with that comes gas for vehicle, food, lodging, anything we need to do or have is all out of pocket. Next is a bigger, more familiar hospital with rare pediatric diseases which is out of state. If I raise the money, or pay out of pocket some how some way we will find the best and most knowledgable providers for our baby boy and help figure out what is best and next step.
He can warm any heart, put a smile on anyones face with his cheerfulness, his "crazy" personality, goofy ways, and a smile that will melt anyone. Theres nothing in this world my self, his father, grandparents, family and friends wouldn't do to get him the help and treatment he needs to continue to grow, be his spunky, funny, testy lil self again. Even just reading this and passing it along we all greatly appreciate and thank you from our hearts. Positivity, prayers, and optimism is key for any one going through this parent or child. This is definatley a situation I couldnt dream of being in, the attitude "not my kid, look at how healthy he appears to be". Then the next day in a blink of an eye your worst fear as a parent begins and all you can do is stay strong, and maintain composure to keep them from feeling your fear, sadness, and failure. Push harder each day to settle for nothing less than the best for them, treatment, and provide the best of your ability.  
Again from our family to yours thank you for reading, sharing, and praying for our son.

Organizer and beneficiary

Brandy Beaver
Organizer
Spring Hill, FL
Brandy Carter
Beneficiary

Your easy, powerful, and trusted home for help

  • Easy

    Donate quickly and easily.

  • Powerful

    Send help right to the people and causes you care about.

  • Trusted

    Your donation is protected by the  GoFundMe Giving Guarantee.