Love for Baby Sloan

Sloan Calderon was born on April 18, 2021, a beautiful, smiley baby girl. After abnormal skin presentation at birth, unexpected newborn screening results and weeks of tests, she was diagnosed with Gaucher’s Disease type 2, an extremely rare neurodegenerative disease. This devastating diagnosis suggests she may not make it past her 2nd birthday. Sloan and her parents have travelled across the country to see specialists, participated in a clinical trial for gene replacement therapy, and have spent over 85 sleepless nights hospitalized.

Sloan’s symptoms have rapidly progressed over the past few months, causing her to require round-the-clock intensive nursing care. This sweet warrior has coded three times, undergone a tracheostomy, and has a feeding tube to help her battle on. Sloan would be in constant danger if not for her parents’ 24/7 bedside care. As her condition continues to take its toll, the demands on the Calderon family’s resources are great and growing.

Please join us in sending love, support, and prayers for their family that they may find some joy in this holiday season.

This page is a way to help Sloan and her family through this difficult and unexpected time of need. All proceeds will go to the Calderon family.

Many who know Maggie, Sloan’s mom, are aware she has been involved with charities, including those supporting medically complex children, for almost all her adult life, understanding all too well the emotional and financial strain other families endured, and now she finds her family in the same situation. 

To learn more about Sloan, please read below where Maggie shares their family’s story:

Her name means WARRIOR.

When we named her, we never thought she’d be in this kind of battle for her life. Our warrior princess, Sloan Elizabeth, has been diagnosed with Gaucher Disease, type 2. How could our beautiful, precious peanut be diagnosed with a fatal disease we’d never heard of? Sloan has the most severe form of this extremely rare genetic neuronopathic disease that because of this neurodegeneration will cause the rest of her body to rapidly decline. The scariest, most dreadful part is that our darling baby girl isn’t expected to make it to her 2nd birthday…we cannot accept that outcome and will fight this with everything we have for our little warrior.

When Sloan’s newborn screening test came back with an abnormal hit for lysosomal storage disorders, we were convinced there was no way Willie and I were both genetic carriers of this terrible disease, just no way the chances –but that is now our reality.

Her first symptom was her severe ichthyosis (dry skin), she spent the first few months coated in Vaseline or Aquaphor. Once her skin peeled though, she had the most beautiful, soft baby skin underneath so we were convinced she was what is called a “self-healing” baby. She still has a patch of scales on her head that have yet to come off, covered by the cutest mohawk of hair.

In those first few months, we were focused on hitting all those exciting baby milestones, determined to show the world that Sloan was going to be the one to beat this fatal disease. We were getting excited that we had been accepted into a clinical trial for gene therapy, a therapy that had proven successful for other diseases that it surely had to work for her!

And then in such a short amount of time Sloan's physical and neurological symptoms progressed despite the gene therapy and added enzyme replacement therapy. She started to loathe tummy time, even putting her on her back on a play mat set her off, she constantly arched her back and her neck progressively craned up and to her right – an attempt to open her airway. Breathing and eating became more and more challenging. It progressed into occasional breath holding episodes (where she turned gray/blue a few times), then turned into daily laryngospasms (closure of her vocal cords making it difficult to breath) and then the laryngospasms became incessant with constant oxygen desaturations. We had to constantly put her on oxygen support, suction out her secretions to keep her from choking or aspirating. Every day was a challenge tracking her daily feedings, worrying if she got enough calories or sobbing when she didn’t and considering alternative feeding options because she wasn't gaining enough weight or hitting physical milestones.

Then one day, she just completely stopped swallowing, even her own saliva. That sparked a 10 week stay at Lurie Children’s Hospital, mostly spent in the PICU, caring for our peanut through holidays and anniversaries. During the first part of our stay, Sloan had a gastrostomy tube placed to help her gain weight – which we are thrilled she is back on a growth curve!!! And while we made every effort to avoid it thinking that the gene therapy procedure was going to change her disease course and prognosis, after a very scary code event, we made the decision for Sloan to have a tracheostomy. She is still not out of the woods as the trach only bypasses her laryngospasms and unfortunately, Sloan is also battling tracheomalacia, a spasm of her trachea causing the lower airway right above her lungs to collapse and preventing her from breathing.

For months and months, it has been a dual effort every day from both Willie and me to just keep her calm and comfortable, but even we can’t seem to keep her comfortable these days. The visible pain on her face, sweating, mild fever, high heart rate, and whole body jerks in pain. It is absolutely devastating to watch and even harder to comfort her. She needs 24/7 monitoring and attention. Just as prior to the trach to avoid a laryngospasm, Sloan’s care also requires constant suctioning her mouth, nose and trach with a medical suction to clear the copious secretions that her disease and the trach cause her to have. She has a good, strong cough to help her too, but this can lead to vomiting, so we try to suction as quickly and as often as she needs to avoid vomiting or mucus plugs. Sleep is something none of us can seem to get because if these secretions become too thick or plug her trach, it could be catastrophic given her trach and bronch spasms. We jump to her aid at the slightest noise all day and night. She will likely remain on heart rate and oxygen monitors the rest of her life and we continue to await home nursing assistance we so desperately need.

Our little warrior continues to show us how strong and determined she is to beat this disease. We tell her every day how brave she is and how proud we are of her in this battle.

We’d do anything for our girl and that doesn’t come without a roller coaster of emotions as we watch her and everything she has been through. It is beyond heartbreaking to watch her go through this and not sure what the future holds.

For more about Sloan and her journey visit loveforbabysloan.com for updates.

Thanks for all your continued support and prayers!

Sloan’s Family