- Current Age:
- Home State:
- Diagnosis Date:
- April 12, 2016
- MPS/Sanfilippo Type:
- Taci and Russell
- Vera and Tessa
What it felt like when we learned our child has Sanfilippo Syndrome…
The moment that the doctor muttered out the actual words that my son had this disease. This disease that I had already researched on the internet two weeks prior to the appointment because the doctor said he suspected it was “ MPS” ! So in that moment when it actually came out of her mouth, time stopped as tears rolled down my face and I knew that my baby was just handed a death sentence. There was nothing I could do and nothing I could say to help him as I held him in my lap in that office. My husband asked about clinical trials and taking him to other countries but the doctor said just take him home and love him while you can. I felt helpless, guilty, empty, I don’t even have words to explain all of the emotions that I was feeling.
How has Sanfilippo affected our child?
They first diagnosed him as Autistic which was the hardest to get past and tell them that there is something more going on with him. He has mild hearing loss and speech delay. He was born with lung disease cause some breathing problems along the way but was able to wean off of oxygen. He has an astigmatism and is nearsighted. Had kidney nephrosis and high blood pressure but grew out of that.
How has Sanfilippo affected our entire family?
Ryder has two other siblings so sometimes it can be tough on them seeing Ryder always going to the doctor. I try to explain to them they are only 3 and 2 years old so they can only understand so much right now to. My husband works full time and thinking about Ryder and the family can be really stressful for him. I stay home with the kids and am now dedicating myself to learning how to raise funds for Sanfilippo.
The hardest part of being a Sanfilippo parent is …
Is trying to get your message across and out there without getting frustrated. Someone thinking you’re making up a disease.
The biggest misconception people have about being a Sanfilippo parent is …
People feeling sorry for me or giving me pity but in reality, I’m a lot stronger and I would like them to join us in our battle to raise awareness for Sanfilippo. It’s okay to be different. We need help in funding a cure to treat these children. There just isn’t one sick child there are many who need this cure. This needs to go viral.
If we could tell people just one thing about Sanfilippo Syndrome, it would be …
I wouldn’t wish this disease on my enemy. It takes away their cognitive abilities and turns children into vegetables.
If we could ask just one thing from the world/people, it would be …
If this was your child, would you not ask for help?
Why are we asking you to donate to Cure Sanfilippo Foundation?
Timing is crucial to funding a cure! These kids deserve to have a tomorrow!