My birthday is coming up! Can you believe I’ll be 9-years-old on November 16? I know you and Mommy are gonna make it a really fun day for me.
I want you to know: I love you guys so much. Even though I can’t tell you with my words, I hope you can still see it in my eyes. I know you still see those moments when I light up and smile. I do hear you, and I do recognize and remember some of the things you do. Sure, maybe not all of them, but a lot of them...I really do.
Please keep being silly with me. Please keep practicing with me on trying to say words…I’m trying so hard.
I love it when Mommy pretends to tickle me and chases me around the house. I laugh so much when she does that. I love it when she helps me practice using my fork to eat. I never used to be able to do that Dad…and now I can!
I love it when Beckham hugs me and tells me I’m his “little bunny.” I wish I could tell him right back that I love him so much. I think he knows though. I like climbing the tree fort with him and sliding down the slide. I especially love it when he reads to me before bed and cuddles up close. I get really tired and fall asleep good when he does that.
Daddy, I love when you pick me up to dance and spin me around. It’s really fun! I hear the words you say to me each night. You tell me you are so proud of me, and that I make your heart super happy. You tell me that I’m good company and fun to be around and I have a nice personality. I might not understand it all, but I hear you. I see your smiles; I see your tears. Please keep spending time with me.
Daddy, thank you for sharing my story with so many people. Thank you for reading me the kind notes and cards and messages to me, from so many people I’ve never even met. There are so many people who care about me and love me.
Can you please tell them all “THANK YOU” from me? Can you THANK them for fighting for me and for my friends who have Sanfilippo? Please tell them how much of a difference they are making! I know you all won’t ever stop fighting for us.
You all do so much for me. You make sure I get healthy food. You help me eat and drink. You make sure I’m changed and bathed. You make sure my teeth are brushed really good. You make sure I’m safely buckled in the car. You make sure I’m with people who you trust, who are kind, gentle, and caring at school. Every minute of every day, you make sure I’m happy and comfortable.
Daddy, I know it’s a lot. For all of you. But I hear you and I know. I know you’d do it all a thousand times over, just to be able to spend more time with me.
I love you all so much,
Now, of course, Eliza wasn’t able to write this letter herself. If she could, this is what I imagine she might say. Writing this letter just about tore my heart out, but I’m glad I did. I’d imagine any letter written by a child with Sanfilippo Syndrome to their parent might sound similar…if they could.
To celebrate Eliza’s 9th birthday we’re hoping to help reach her $99,999 goal, in just 9 days.
These urgent dollars will move research projects to the next phase to help save and better Eliza's life and so many others just like her. As Eliza said: we’ll never stop fighting. And to my beautiful little angel Eliza, I say: “My love, I’d do it a MILLION times over.”
With everything I have, my deepest thanks,
(Eliza’s Dad, Donor and President of Cure Sanfilippo Foundation)
You can help celebrate Eliza’s 9th Birthday by donate here and share the link to www.SavingEliza.com.
What is Sanfilippo Syndrome? Sanfilippo Syndrome is a fatal brain disease in children. It's rapidly degenerative and takes away a child's mind and body. It's often likened to a 'Childhood Alzheimer's' due to the severe dementia that occurs. Currently, there is no proven treatment or cure. For more information on Sanfilippo, the Foundation, and the families fighting for a cure, visit www.CureSFF.org