‘There is ALWAYS something to be thankful for’: Mother, daughter bond through treatments for rare disease

More Stories like:

“89 needles. 89 sticks. 89 times that the skin was punctured on my baby’s chest. 89 times that she was left with a red rash from where the adhesive sat from the SorbaView dressing on her sweet baby skin. This world is a dark place and I can’t say it enough, she deserves SO much more than what it has to offer, but I am eternally grateful that we live in a world where there is a treatment for her. I believe in medicine. I believe in miracles. I believe that one day there will be a cure. Until then, I will be thankful that even though it isn’t ideal to have a port and have it repeatedly accessed, that we have that available for her. These needles represent roughly three years worth of treatments.

Pile of empty needles that have been used over three years on one girl
Amanda Regalado

This does not include the countless doctors and hospital visits she also had to be accessed nor does it include the other 5 and a half years that she has had treatment. I look at this and I don’t feel sad. I feel appreciative. This is a life source for Bailey. This is what places the medicine where it needs to be to keep our girl fightin’ the fight! This represents 89 days of sitting with her and talking to her and watching this medicine do something for her that her body cannot do on its own. The best part about treatment Tuesdays is that Bailey looks forward to them! She’s fearless and her heart shows me that no matter how dark this world is, there is ALWAYS something to be thankful for.

Little girl with rare disease looks up smiling while surrounded by needs in heart shape
Amanda Regalado

When Bailey Grace was 10 months old, she was diagnosed with a very rare disease called Gaucher Disease. She has type 3. She has had a bone marrow aspiration, her tonsils and adenoids removed, two strabismus repair surgeries, two port placements, and plates and screws put into both of her hips. She has endured more in her 9 and a half years than most adults do in their entire lifetime. Some of these surgeries have been a breeze. Astoundingly breezy. Like she woke up from her second port placement surgery and felt good enough to go to Target to pick out a toy. Of course, we let her!

Little girl with rare disease as a baby receiving a shot
Amanda Regalado

She is, by far, the bravest person I know. She is a warrior! This is not to say that some of the days that have come along on this journey have not been incredibly dark. She has had to push herself in ways she didn’t feel her body was physically capable of doing. Those days are so few and far between though. This dark tunnel has shed some serious light for our girl. There is nothing in this world that I would not do to lift this incredibly heavy burden for her. As a mother, it’s incredibly heartbreaking to stand by and watch your child have to live a life around doctor appointments, hospital visits, and surgeries, and not be able to do anything except be present and completely supportive. With that being said though, she does it with such Grace! And as sad as it is, she has never known a life any different. I would take it and carry it, gladly, but I know I wouldn’t be even half as brave has she has been. As she is every single day.

Toddler with rare disease lying in hospital bed with fuzzy blankets, books, and stuffed animals
Amanda Regalado

These last few months have been really rough, to say the least,  and although there have been many hard days, we know we are so close to great days! Her health is being closely monitored by many specialists and she is on her way to being in the best health of her life. So many people look at her and tell me how sad they are for her. I look at her, the life she lives, the fight she fights, and I am so incredibly thankful that no matter what she goes though, no matter how much is put on her, most days are ended in smiles. They are ended with grateful hearts.

Little girl with rare disease sits at table while holding an oxygen mask to her mouth
Amanda Regalado

Not all families with Gaucher babies have been as fortunate as we have been. It makes my heart hurt. Maybe it’s in their honor that we refuse to take the life she has for granted. Maybe her attitude on it all makes it easier. I honestly don’t know. What I do know is that she is fearless. And I am so unbelievably thankful for that! We have fun at all of her appointments. We talk on the long drives. We sing. We laugh. We eat whatever she wants. We do our best to make it special for her. We remind her that even though so much of her life takes place around medicine and doctor appointments, she is never alone and that her life is something to truly treasure!

Little girl with rare disease sits in hospital chair smiling with blankets on her
Amanda Regalado

Treatment days are the best. Those are our days. We both look forward to them. Me, because it’s good bonding time that I know I will have with her and because I am so thankful that even though she suffers from an incredibly rare disease, there IS a treatment for it. Her, because she loves ‘doctor stuff.’ It fascinates her. She likes wearing her mask and gloves and playing treatment. Up until last August she was on bi-weekly treatments. Since August she has been on weekly treatments to get ahead of what this disease has done to her tiny body.

Mother holds infant with rare disease in hospital chair feeding her a bottle
Amanda Regalado

About six and a half years ago, we were able to move these treatments from the clinic we had been driving to every other week for the previous two years, to the comfort of our own home. About five years after that, I was trained to do it by myself. I access her port and the medicine runs for 90 minutes. She never complains. We sit together while she watches whatever she wants and usually does some drawing, while sitting on our couch, or in the play room, in her pajamas. It’s crazy to look back and think just how far she has come, what she has been through, and just how much of it has been done with a smile on her face. She is an inspiration. She is MY inspiration and I could not be more proud of her. She is our saving Grace. I’m blessed to be her mom and walk this journey with her. My entire life, even as a little girl, I knew that all I wanted in this world, was to be a mom. I had high expectations for motherhood and what our lives would look like. She has exceeded them all, bar none.

Close up showing half of mother with mask on with daughter who has rare disease lies on couch with mask on
Amanda Regalado

My highest hope with sharing a piece of Bailey’s life would be to bring awareness to Gaucher Disease. For people to go out and research it. I can think of only a handful of times since Bailey was diagnosed, that I have shared her diagnosis with someone and they had actually heard of it, including doctors. With awareness comes knowledge. More knowledge can lead to more medical advances. And with that can come a cure, hopefully in Bailey’s lifetime. But I know no matter what, Bailey will continue to fight just as hard as ever. More than ever.

Toddler with rare disease sleeps in hospital bed with american girl doll in her arm
Amanda Regalado

She continues to show more strength every single day. And I know that I will continue to advocate for her until the day I take my last breath. She is not alone and until she can have her own voice for the medical part of her life, I’m proud to have it for her. When the time comes that she is able to decide these things on her own, her dad, brother, and I will continue to sit with her. We will stand with her through it all!”

Toddler with rare disease smiles with a thumbs up in selfie with mother
Amanda Regalado

This story was submitted to Love What Matters by Amanda Regalado, 28, of Midlothian, Texas. She chronicles Bailey’s health journey on her blog. Submit your story here.

Do you know someone who could benefit from this story? Please SHARE on Facebook to make them aware there is a community of support available.


 Share  Tweet