"the world was her oyster, and this disease just took it all away from her"

Four years ago, shortly after receiving the devastating and soul-crushing news that her daughter Skyla Rae (5 years old at the time) was diagnosed with Sanfilippo Syndrome (aka “childhood Alzheimer’s”), Stacey Reynolds began planning Skyla’s funeral. “I knew it wasn’t going to be something I would want to do after she died”, said the Oldham (United Kingdom) mother of 4. 

​As difficult and heartbreaking as it was at the time to plan her own daughter's funeral, Stacey is grateful she did it - because it ultimately allowed her to give her brave, beautiful Skyla Rae the fairytale sendoff that she so deserved - complete with a princess coffin, horses, a flock of doves, the whole nine yards (as they say in America) - perfectly befitting of the brave and beautiful warrior princess that Skyla was and will forever be in the hearts and souls of so many that followed Skyla’s (and mum’s) heroic Sanfilippo journey over these past few years.

Stacey described her daughter Skyla Rae as a feisty little "firecracker", the "life of the party", and the glimmering ray or light wherever she was. She knew nothing but love and affection - to family, friends and strangers alike. But under that soft sweet exterior and radiant smile was a fighter.  A brave and positive minded little Sanfilippo warrior child who touched and inspired the world with her heroic journey. She was in and out of hospitals, month after month, fighting as hard as she could.  In the past, she had always bounced back from brushes with death, but not this time.  Her little body had given it everything she had left. She was only 9 years old.  

And now, Stacey vows to honor Skyla's memory and legacy by continuing the fight against Sanfilippo Syndrome and other MPS diseases until they're eradicated and no longer taking the lives of innocent children.  One of the specific causes that Stacey is now fighting for is the urgent need to make comprehensive genetic testing fully available to families everywhere—and as early in the child's life as possible.  Early genetic testing is a cause that Stacey's quite passionate and fired up about, because it really hits home.  In fact, Stacey and her family first learned of Skyla’s Sanfilippo Syndrome diagnosis when she was five years old - and ultimately left the family with 4 short years to not only grieve this very emotional and life-changing ‘loss’ of her daughter, but also—at the same time—raise this very daughter (Skyla) to be the best, bravest and happiest version of herself that she could possibly be, during her short time on this Earth.

Stacey Reynolds did just that. She fought to the end with her daughter, tirelessly, and that fight will carry on because it has already fueled a fire and a mission inside of her more powerful than she ever imagined. “If my efforts can help save even just one other family the heartache that Skyla and our family went through", said Stacey, "then it will be well worth it”.  

Rest in peace, beautiful Skyla Rae.  Your life mattered.  And your fight and legacy will live on. 

To support Stacey’s campaign to create “Skyla’s Law” in the UK—an initiative to educate and encourage medical communities and new parents about the importance and availability of early genetic testing--please visit here to sign the petition. 

In the clip below (1 minute), Stacey talks about her daughter Skyla and what made her so special...  and directly following that you'll find the full interview (7 minutes) - which took place on February 8th 2024, only a month after Skyla passed away.

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The world was her oyster, and this disease (Sanfilippo Syndrome) just took it all away from her "

​Click below for the full (7 minute) interview:

There was only so much her little body could take. She let me know she had had enough.  She let me know it was her time".  ​

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