Medical and Funeral costs for baby Kiera Carey

Sweet Kiera gained her wings 2/7/22 @2:28pm after a short infection/illness her little body couldn’t handle.  Please share  

     Kiera was making incredible improvements. Holding her head up, starting to swallow again, smiling at her mama, and so much more. 

    We knew she wouldn’t be here very long, but with gene therapy we were hoping for at least a couple of years. It was a scary Thanksgiving and Christmas as we didn’t know if she would be strong enough to go home. From nearly slipping away a few times, her turn around was nothing short of a miracle. The experimental treatment was working and giving her and her family more precious quality time. Kiera was getting stronger, hitting milestones and her personality was shining through. Hopes for her to enjoy a significantly longer life was becoming a reality…

     Unfortunately her time was cut so much shorter after a sudden illness that overwhelmed her little body. Valley Children’s did all they could but weren’t able to save her. My heart breaks... Now her family has to do the unthinkable.. they have to say goodbye. With the medical expenses building up and now costs related to her passing, any donation big or small is needed more than ever and very much appreciated.

Please share, anything helps

     Thank you Amanda for letting us be a part of her journey. Your updates and beautiful pictures of her life on ‘Kiera’s Journey’ have made everyone feel connected to your sweet Kiera bug. I am so grateful we got to meet her. It has been an honor to be part of her life. You are incredibly strong and dedicated. When anyone else would have fallen and given up, you stood back up, wiped the tears and made sure Kiera was taken care of and happy. I see the love you gave and the grief you feel.. we are mourning with you. You’re an amazing mother who loved her baby girl more than words and she knew it. Because of you, she will be remembered and loved by many.

Rest easy sweet angel

Original story: 

My name is Diana and my dear friends John and Amanda Carey are going through Hell and back fighting for their baby girl who has been diagnosed with a very rare and fatal genetic disease called Gaucher Type 2.

 

This is their sweet baby girl Kiera Yvonne. At 4 months she was admitted to Valley Children’s Hospital in Madera to evaluate swallowing and weight gain problems. After weeks of testing, they learned that little Kiera was born with Gauchers type 2, also called acute infantile neuronopathic Gaucher disease.

 

Their family’s heart has been shattered learning that their baby girl will most likely pass away long before she can celebrate her 2nd birthday. Average life span is only a short 11 months. With the prospect of having only a few more months to spend with their baby girl and her smiles, I am hoping enough can be raised to help with medical costs, time away from work, travel expenses for the gene therapy and eventually funeral costs.

 

Effects of the disease are already swarming her tiny body. She started having trouble swallowing at 3 months old and now requires a G-tube for feedings. She’s starting to show signs of seizures during her baseline testing to monitor progression. Her family has not given up on her and have been accepted to be part of an experimental gene therapy treatment in Pennsylvania that may prolong and hopefully help improve her quality of life. Her first dose will be either Wed 11/17/21 or in December.

 

Kiera is currently across the country in Pennsylvania with her daddy awaiting that first dose of gene therapy but unfortunately mom had to leave early to go back to work. Mom teaches at a local college and dad owns his own cleaning business that doesn’t run if he’s not there. Budget is tight and spending every moment with Kiera is precious. No parent should have to leave their baby’s side knowing what little time they have left with her.

 

We fear she may not make it to Christmas with the current progression rate of her disease and are working on documenting her life with pictures and updates. Any help you can give this wonderful family so they can focus their time on her and make the most memories without worrying so much about how they will pay their bills and cover her medical expenses is greatly appreciated.