On May 30, 2012, my world ended.
After months of unexplained, gigantic swellings, Sienna was finally diagnosed and it was terrible news: FOP (Fibrodysplasia Ossificans Progressiva), a disease so rare that it impacts one in two million people. There are only 700 known cases in the world. Through my uncontrollable sobbing I heard snippets of what her diagnosing doctor said: “her muscles are turning to bone”, “we can’t operate to remove the bone because it will trigger a response to grow back even stronger”, “progressive loss of mobility”, “any trauma, viral illness or intramuscular injection can trigger a flare-up, resulting in more bone”, “many patients alter their lifestyle. Parents take kids out of sports and have them wear a helmet”, “no known cure or treatment”, “some patients don’t make it past their early 20’s”…
With each word that she said, it felt like she was trying to rip Sienna out of my arms and take her from me, and I just kept hugging Sienna tighter, feeling like if I held her tight enough and blocked out what she was saying, maybe it wouldn’t be true. When we got in the car after that appointment, “What doesn’t kill you makes you stronger” by Kelly Clarkson was playing on the radio. No joke. I am pretty sure what crossed my mind at that moment was “Darn* you, Kelly Clarkson, you may be right but I have had all of 10 minutes to process this and I’m NOT stronger yet!”
(*might have been a stronger word than darn)
For the next few weeks, every night was sleepless and every morning I wondered if it had all been a nightmare. I found (and still find) it hard to believe that something this terrible even exists. A healthy mind trapped in a body that can’t move sounds like a science fiction novel… But I quickly learned how much hope there is based on the state of research lead by a brilliant team at Penn. Sienna now wears a helmet everyday, but I let her decorate it with a princess tiara and sparkles. People stare when we are out in public, but usually they see the sparkles and tiara and break into a smile and say “wow, a real princess!”
Over the course of the past year I decided that I could choose how I reacted to this, how this impacts our lives and how our lives in turn impact others. I chose to look more closely at the good in the world, to accept help from others, to tell our story and to make our hope for Sienna contagious. And I have realized how lucky we are. Sienna is doing great right now. She is a regular 2-year old, who we have to beg and plead to slow down and be careful every waking hour of the day. She is smart. She understands big words and knows some Korean and Spanish. And she is funny. Boy, is she funny! And she is sweet. She takes such good care of her doll babies that sometimes it makes me cry because she will only be able to have her own babies if she is cured.
The best thing that has come of the past year is Sienna’s Flower Garden, dreamed up by the amazing Natasha Lam O’Rourke and brought to life by Connelly Partners, her agency based in Boston. Sienna’s Flower Garden is a beautiful place full of messages of love and hope and support, and it helps collect donations to advance research for a cure. And it is so “Sienna”. Sienna has loved flowers ever since she laid eyes on them as a baby and to this day could not be happier than when she is in a flower store, at the arboretum, receiving a huge bouquet, or even just hunting dandelions.
May 30th, 2012 was the worst day of my life, and every morning my heart stops for a second as I check for new flare-ups, but I just keep focusing on the day that an effective treatment will be ready. That day will be so amazing that I already feel a little sorry for people who are living regular lives and don’t have this kind of day to look forward to. Help me and 699 others get to that day by spreading the word:www.siennasflowergarden.com
Love to all of you, and thank you to everyone who is spreading awareness for Rare Disease Day! #RareDisease