Hello,

Audrey is turning 3 on September 24! She is everything to me. She has come a long way in her 3 years of life. I’m always looking to improve her quality of life because it’s not her fault she was born this way and I carry that heavily with me every day. Some days I’m strong and tell myself everything will be alright and sometimes though I don’t show it, I am a complete mess.

I have been battling with my pride and have humbled myself to start a Go fund Me during her birthday this month.

This month a lot is happening... She is turning 3 (yay)! She is getting a manual wheelchair, though she can’t move it independently, it’s still one of our goals for her to achieve that one day as she gets stronger. Most importantly Audrey is going to be able to go to a pre-k school. I am going through so many emotions even as I type this message.

I am trying to purchase a portable oxygen concentrator for my daughter. My intention was to purchase it next year, so I have more time to save money.

With her recent surgeries, she has improved her mobility condition a little more thus allowing us to enroll her in school a year earlier than anticipated. With her improved mobility accommodations, a year sooner than anticipated, I would like to humbly ask for a little help purchasing the equipment to improve and expand her possibilities to do more and improve her life.

This will allow my ability to expand her world and quality of life in school, to everyday things that we take for granted like making a simple trip to a local park, going all together to an all-day family event. Trips anywhere and like her many appointments everything has to be planned meticulously and preparing for the worst-case scenarios like power outages, running out of oxygen and not having a hospital close enough to provide emergency oxygen. We will be able to load and unload the oxygen concentrator at school and simply replace/switch the batteries as needed.

The teachers and therapist will also be able to move her around during therapies and activities in her school.

I have diligently researched and have chosen to go with the Phillips Respironics - SimplyGo Portable Oxygen Concentrator – I will purchase this through a medical equipment company or an approved vendor. This oxygen concentrator requires a medical prescription as well and if you wish for transparency, I will have no problem doing so. I would celebrate it, because all I want is to do what I can for my baby!

I averaged the different prices of six different authorized vendors and the average was 2066.20. That is just what comes with the device. Additional batteries that she will need, I will also cover myself.

Every dollar will be one less dollar that will help bring down the expense. It will be the best gift we can give her.

I have asked and advocated for her insurance to cover it, but they will not. Her secondary insurance won’t either.

I am realistic and aware that she may never experience many of the everyday things normal children get to experience but I will never give up on my child.

Audrey was born with Campomelic Dysplasia.

"Campomelic dysplasia is a type of skeletal dysplasia. Skeletal dysplasia is conditions that cause problems with how cartilage and bone grow. Campomelic dysplasia can be a life-limiting condition. In severe presentations, survival is sometimes possible with life-sustaining interventions. However, some children with campomelic dysplasia can survive into adulthood without the need for those interventions. In the newborn period, respiratory distress may occur due to the lack of development of the cartilage rings that support the tracheobronchial tree. Although respiratory insufficiency may lead to hypoxic brain injury, in general patients with campomelic dysplasia have typical intelligence."

https://www.nemours.org/services/campomelic-dysplasia/about-campomelic-dysplasia.

When I say it takes a village, this is the lists of the type of specialist that she sees through the year on a regular basis.

• an Orthopedic surgeon: for bone and joint problems, hip dysplasia

• a Neurologist/neurosurgeon: for spinal cord problems and kyphosis and scoliosis

• a Genetics doctor: to help families understand the diagnosis and plan for future medical care

• a Plastic surgeon: to help if there is a cleft palate- Her surgery is in January 2024!

• a Pulmonologist: for her tracheostomy, bronchial malasia and tracheal malasia.

• an Otolaryngologist: ear, nose, and throat (ENT) doctor to help with hearing problems

• an Audiologist: for hearing testing and hearing aids

• a Pediatrician: for routine care

• a Physical Therapist: for help with muscle strength and joint motion

• an Occupational Therapist: for help with writing, eating, and other everyday activities

• a Speech Therapist: for help feeding.

• Gastroenterologist – GI and G-Button feeding