Loralei and her mother Brandi, stepfather Cody, and siblings Brayden, Blayne, and Sierra.
“I KNEW FROM THAT MOMENT THAT OUR LIVES WOULD NEVER BE THE SAME. FEAR HAD TAKEN OVER.”
– Loralei’s Mother
Current Age: 7
Home State: Kentucky
Diagnosis Date: February 26, 2020
Sanfilippo Type: MPS IIIA
Parents: Brandi and stepfather Cody, and Robert and stepmother Jamie
Siblings: Brayden, Blayne, Sierra, and Robert
What it felt like when we learned our child has Sanfilippo Syndrome…
It felt like my world had come to an end. That I had no clue what was happening. I have never been so scared and so heartbroken. It’s like being in a nightmare that I can’t wake up from. That it’s someone else’s life. I prayed so hard for God to give her to me and the thought of losing her to something out of my control is unbearable.
What our child loves the most is …
Loralei’s life revolves around Mickey Mouse! She is crazy about the show and nothing else! It makes her laugh and smile and calms her, all at the same time. But she also loves her family so very much!
How has Sanfilippo affected our child?
Sanfilippo has already began to take things from Loralei that she used to be able to do. She used to talk, and at 17 months old, she never spoke again. She use to walk so much better, and about a year ago, started falling a lot and losing her strength to get around. It’s very fast progressing for her, it seems. It’s so sad to watch. It’s been bittersweet to see that what all she has been through her entire life finally has a reason, but it’s so awful knowing it’s Sanfilippo Syndrome.
How has Sanfilippo affected our entire family?
It has changed so much in such a small time. It’s confused her siblings and there’s so much they don’t understand. Her two brothers are autistic so it’s been extremely hard for them to comprehend. Her sister understands, but she is heartbroken and scared. Along with all of our extended family who love her and just pray for God to send a healing to her.
The hardest part of being a Sanfilippo parent is …
The helpless feeling, being out of control of getting her a cure that will make this nightmare go away.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
Sanfilippo Syndrome is nothing that you could ever imagine until you are going through it. Be understanding and compassionate towards those living with it.
If we could ask just one thing from the world/people, it would be …
Pray that there is a cure found to save all the children suffering from this.