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Urgent Need for Vehicle Funds

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Hello, my daughter, Rayleigh Noelle who was born 7/24/2020 has Cystic Fibrosis and is susceptible to getting sick very easily. She also is level 2 Autistic with Sensory Processing Disorder, awaiting testing for adhd, was born with a clubfoot that needs to be seen every 6 months by her orthopedic surgeon 2 hours away. Because of her corrected Clubfoot she wears an Orthotic that she'll have to wear every night for 12 hours until AT LEAST she turns 5. Her orthotic has to be adjusted in person periodically over 4 hours away. Because she was born with Cystic Fibrosis she has to go to the Cystic Fibrosis Clinic over 2 hours away in person every 3 months for the last 3½ years and we will forever. We have been seeing several different types of developmental people since Rayleigh was 2 months old actually. She started Early Intervention services when she was just 2 months old because of concerns for possible delays from her Clubfoot and we continued on through when she was later diagnosed with Autism with her Developmental Pediatrician at 22 months old and we followed up with her recently and she believes she likely has ADHD as well. She's about 2 hours away. When Rayleigh was a little over 6 months old she was in the 1st percentile for weight and the .5th percentile for height and her Cystic Fibrosis Clinic were concerned and wanted to add some things for calories and fat and so they told me to try peanut butter and scrambled eggs. If this didn't work after a bit I was looking at possibly her getting a feeding tube also known as a gtube getting placed. The first time I gave her a smear of peanut butter on her tongue and she didn't really seem to like it but she there was no reaction. The next day for morning snack I gave her a tiny smear of peanut butter on the tiniest piece of bread and she ate it. Everything seemed fine. She had her bottle and went for nap. I watched her on the monitor and she was EXTREMELY restless and she was such a good napper. I immediately got her up and she was COVERED in hives! So yes she has a severe anaphylactic peanut allergy as well and we have see her allergist once a year 2 hours away. Because of her Cystic Fibrosis she is on on a lot of medications. One of these medications has been revolutionary in changing how Cystic Fibrosis affects people with the condition and even makes it so that people on the medication are nearly reversing "in a sense" their Cystic Fibrosis. Unfortunately, for some, it also has some unfortunate side effects. One of those is elevated liver enzymes. This happened to my daughter and her liver enzymes unfortunately were 6 times the normal limit! Because of this we had to immediately stop this revolutionary medication and hope that it didn't cause lasting damage(she's being rechecked at her next appointment in March). She also attends a special needs preschool however and that meant she was again highly susceptible to catching something. She did end up going through numerous Cystic Fibrosis exacerbations, which basically are numerous symptoms similar to a cold without anyone else around her getting sick. The worst part is that in December we got into a car accident and I totalled my car. We both were ok but unfortunately ever since then she's had to take medicaid provider transportation to school, appointments etc. It's also made it extremely difficult to get groceries, get her quickly to the doctor, hospital or anywhere quickly. I'm a single mother and I am only on disability because I have numerous chronic conditions of my own including Hypermobile Ehlers-Danlos Syndrome, Tourettes, etc. I'm not able to work because of constant daily pain and my Ehlers-Danlos Syndrome is constantly deteriorating condition. I go to physical therapy every week. I've numerous surgeries already and I might be looking at a total knee replacement in the near future. Last Saturday I put a down payment on a suv and then I came home to find out my daughter was very sick and all week I've been working on getting her better doing 2 airway clearance vest treatments and nebulizers and sterilizing everything everyday. My case manager and her case manager have been trying to help me look for additional funds towards this vehicle but I desperately need help! Donating even $10 or $20 truly helps me get closer to my goal of the funding needed for the purchase of our Suv! Please if you can help at all or share this everywhere! If you're not able to donate to this or would like donate to my cashapp instead that link is

$Rayleighsmama2020

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Donations 

  • Gerald Forsyth
    • $400
    • 4 mos
  • Anonymous
    • $20
    • 6 mos
  • Anonymous
    • $20
    • 6 mos
  • Susan Logan
    • $50
    • 6 mos
  • Anonymous
    • $45
    • 6 mos
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Organizer

Melissa Boyd
Organizer
Eastport, ME

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