Support the medical fight for Lilah

  • N
  • L
28 donors
0% complete

$3,595 raised of $3.5K

Support the medical fight for Lilah

Hello, we are Daniel and Araceli and the parents to our babygirl Delilah Ariel. Since Delilah was born she has been dealing with some GI issues and doctors at first stated it was due to her being premature and would eventually grow out of it. However as time went by we started noticing her skin changes and as a breastfeeding mom we immediately changed the diet completely. However nothing changed, it became worse. We sought help but ointments and steroids were prescribed consistently. Initially they would work but then her skin would get accustomed to them and stop working causing a flare up with a vengeance. We went to see a n allergist who wanted to "experiment " on Delilah but we refused because it included a series of vaccines that did not have sufficient evidence to work on babies under 6 months. We were then referred to another doctor, more meds, same end result. We have had multiple emergency room visits because of her allergies suspected eczema and nausea. This last time we saw a different allergist we started testing for food allergies and sure enough the baby had multiple food allergies which included dairy. Even with the tests we started noticing Delilah wasn't gaining weight we assumed she was just petite and her pediatrician didn't have much of a concern initially but wanted her on a toddler formula since I stopped breastfeeding at a year old. We then moved on to a Pediatric GI who prescribed her new meds and a new expensive formula because of a suspicion of imflamed intestines. We got some relief knowing we may be getting some answers soon but that was cut short because we then received notice shortly after our visit that our health insurance would not cover the brand of medications but the generic only. However not many are aware there is a Cromolyn Sodium shortage and it has been nearly impossible to find in the US as to my knowledge. We contacted the insurance company submitted a PA twice to please pay for the Gastrocrom and the insurance denied both claims even with the all the clinical notes and letters from the doctor. Our baby in the meantime was still not eating much and her daycare notified me almost daily about her scarce food intake. We did notice she could only take in her formula without vomiting daily or her skin flaring which would cause severe bleeding. We have had countless sleepless nights because if her tummy doesn't hurt her its her skin having a severe flare up. We had contacted every pharmaceutical company that manufacturers the generic, the FDA we even contacted Mexico and Canada and everyone said the same thing. The generic brand is on a back order with no release date or there is a very limited supply. Our best bet is finding a pharmacy who doesn't prescribe it often and travel. We were finally able to locate it at a small pharmacy in Murphy, TX but when we called someone else came in with a prescription. Then on thursday evening (Feb 29) by the grace of God and a friend who networked we found it at a Sam's in San Marcos, TX. But the fight continues, I'm not sure if this Sam's will have next month's supply. The brand medication she needs is at an average cost of $1,181- $2,248 for a 30 day supply. Blood work has been submitted now we are being referred to an Immunologist because of her results and may need to travel to Houston Children's Hospital to be seen due to availability. In the meantime, we have been trying to feed our baby the nutrients she needs to keep her off a feeding tube and out of the hospital. We had no clue that most of her allergies would be in almost every item at grocery store so our cooking has been limited as to what she is able to eat. We have contacted numerous non-profits to help with prescription costs, we contacted the Nurses association with the suspected diagnosis she's pending but no one seems to be able to help us. We are both working parents and have to take time to tend to our child but insurance is only paying for a portion and everything is adding up. However they continue to refuse to pay for the brand knowing of the generic shortage crisis. Our  friend who helped us is working on helping us cover the next month to locate medication but our insurance will only pay 5-7 days ahead of the next month's supply so we are praying we find it without any lapse. Since medication has been administered we have noticed an increase in Delilah's appetite so we know the medication is working. She still has some nauseous moments but her Pediatric GI will be moving forward with her EGD. We will continue to fight with the insurance company will not stop, I am submitting an appeal and going to continue calling the pharmaceutical companies. We are not asking to pay for all of Delilah's medical expenses but just enough so we can continue to give her the medication she needs, afford the formula she needs and have some type of normalcy in her daily life. Delilah is 15 months old and our sweet pretty girl is such a happy baby.She loves to play with her friends at daycare, she is loved by all her siblings and we all just want her to be able to thrive. She didn't deserve this and everyday we pray her symptoms get better. I as her mother cry almost everyday when I don't know what's hurting her this time. I wish I could take her pain away, it sucks not knowing what it is this time. We pray that we find answers for her condition soon so we can move forward and help our girl. If you read this far, I appreciate your help even if its just $1. If you can't help, we do ask that you keep our family in your prayers especially our baby Delilah, we greatly appreciate it! We are private ppl when it comes to our children so it took alot for me to come on this platform and seek help. Thank you for your time and possible donation. Other payment option below if you prefer

Our cashapp is: $Delgadogirlz

 GoFundMe Giving Guarantee

This fundraiser mentions donating through another platform, but please know that only donations made on GoFundMe are protected by the GoFundMe Giving Guarantee.

Organizer

ARACELI DELGADO
Organizer
San Antonio, TX
  • Medical
  • Donation protected

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