My dear daughter, when I imagined you at 12, I pictured us chatting about everything from fashion to friendships, school adventures, and the twists and turns of growing up. As a first-time mom, I envisioned being the kind of parent you would feel comfortable confiding in. I wanted to embrace your individuality, encouraging you to think independently and resist the pressures of conformity.
As you transitioned through your toddler years, I looked forward with excitement to the remarkable woman you would become. You were a bundle of joy—sweet, funny, and full of life—ready to take on the world with endless possibilities.
However, as you started school, it became clear that something wasn’t quite right. Your progress was slower than that of your peers, leading us into a whirlwind of special education services, psychological evaluations, and countless medical consultations. You faced more testing in your young life than many do in a lifetime—blood tests, MRIs, EEGs, and so much more. You were so brave through it all.
Then, at just 8 years old, we received the shattering news: you have Sanfilippo syndrome, a rare and progressive terminal illness. In that moment, my world felt irrevocably altered. How could I carry on? Would I ever find joy again? The future seemed so uncertain, and my heart was heavy with despair.
It’s been over three years since that diagnosis. We both continue to thrive; you still dance, sing, cheer, read, and write. Your spirit remains vibrant, my sweet daughter. While you may not fully grasp the reality of your illness, you embrace a life filled with love and laughter—understanding the essence of joy in your own beautiful way.
Though we don’t have the conversations I once imagined, we share meaningful moments discussing daily plans, such as dinner or tomorrow’s activities. I treasure the sound of your laughter, even as I struggle to express the weight of my feelings—fearing that it might make you feel like something is wrong with you.
My lovely Amelia, here are the thoughts I want to share with you:
- I am deeply sorry that you have to navigate life with Sanfilippo syndrome.
- I regret that your days are filled with doctor visits and extra medications.
- I wish you didn’t have to face challenges when expressing your thoughts and feelings.
- I mourn the experiences you miss out on at 12 years old.
- I’m grateful you’re unaware of the judgmental stares from strangers who cannot appreciate your unique journey.
- I admire your indifference to others’ perceptions.
You have brought an abundance of love and joy into my life, far beyond what I ever imagined possible. You’ve impacted the lives of many, some of whom you may never meet. You have shown me resilience in the face of adversity and taught me the importance of compassion towards others.
I am so proud of everything you have achieved; you have already defied the odds. Your quirky personality, your tender heart that melts during our wedding video, and your ability to see the goodness in people are just a few of the things I adore about you. The innocence with which you view the world and the joy you find in simple moments are truly inspiring.
You are surrounded by more love than you can ever comprehend. We have chosen not to share the full extent of your condition with you. Your spirit and joy will continue to resonate in our hearts. Although you are 12, your mind reflects that of a 6-year-old. We don’t want the burden of mortality to dim your bright light. We hold onto hope for a cure for Sanfilippo syndrome and wish for you to remain the joyful, fun-loving girl you are. We will carry the weight of this diagnosis, allowing you to sing, dance, laugh, and embrace life fully.
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In summary, while we may not have the conversations I envisioned, the love and joy we share create a beautiful bond. Your spirit shines brightly, and I will continue to cherish every moment with you.