Once a private person, many have seen how Leo has transformed me into opening up in ways I never imagined. Revealing thoughts and emotions to all of you because you all have fallen in love with my son and surrounded us with a support network that gives us strength everyday.
Your love and support for our family has been unbelievable. Prayers, cards, meals, donations, parades, sharing Leo’s story, donor milk, your comments, gifts for Leo and so, so much more. Over 600 people registered last year for Leo’s race. Over $80,000 raised and double from an anonymous donor! Thank you will never be enough. Humbled doesn’t begin to describe the way we feel because of all you. We love reading and hearing your kinds words saying we are amazing, that we are an inspiration, but the very people saying these things, going out of their way to speak to us when they don’t even know us, and volunteering their time for us are the inspiration! You are listening and sharing and helping us change things for Leo and so many others.
And here I am! Horrible with thank you notes, hard to reach on the phone, and late to respond to texts, messages and emails. We are bad about RSVPs because we want to be there, but we just never know if it will work out. We sometimes struggle to make what seems like a simple plan, and we are very particular when we do make them. We miss birthdays and important events. We try to be as active as possible and give Leo every experience possible, but we still very much live in a bubble. It can feel selfish, because we are so deeply grateful for all of you and have trouble expressing our gratitude.
And we keep asking for more. And that can be very hard for us when we already feel so incredibly blessed by your support thus far. But the thing is, what I remind myself, this is for Leo. And children like Leo. We want to spread SMA awareness and change the stigmas and biases that can affect individuals with different abilities than you or I. We want to live life to the fullest, and never take a moment for granted. But ultimately we want to save Leo’s life. Because we choose not to think about the “what ifs” we can often be detoured from stating the obvious, and that is we need a cure for SMA. Statistics show most will not live past two years old. No one can put a timeline on Leo’s life, but it is a fact that SMA has significantly shortened his life expectancy. That is our reality, and things have to change for Leo and for other families going through what we go through every single day.
It is a natural reflection at the end of the day to spend time thinking if this was it, if Leo was not here tomorrow, would I be proud of the mother I was today? Could I live with myself if this was my last day with Leo? Writing this is difficult, because the thought process I go through is so natural and easy. I don’t dwell in the sadness, and I don’t let my mind drift to the darkness that life would be if this did happen. It is a simple self-reflection, and I try to make tomorrow better in whatever way I can. It occurred to me last night that perhaps I have not been as open about his inevitable shortened life. I have been trying to educate, and update, but I feel like I have been missing being the advocate I need to be for my son. Do you know that we save his life every day? Do you know that what starts as Leo just crying over something small can easily turn into him not being able to breathe and an emergency situation?
So here it is, after all you have done and continue to do, we still need you. We need all of you. You all know there is no cure for SMA. This does not really encompass the concept that there is NO treatment for SMA. There is NOTHING. We manage the progression with various interventions, we change diet, give supplements, have therapy and try to do everything we can but there is nothing available for Leo. We have learned a great deal about the ridiculous timelines that exist before a drug is available to the public. We have learned even more where the funding comes from for the labs and research that leads to treatment. It is from you. The groundwork and the development of ideas that could lead to trials, treatments and a cure, come from people like you. From large corporate donations, to the child emptying his piggy bank to pay his registration fee, every single donation and registration matters. So as his mother, being his advocate, I am asking you to please share Leo’s story. There are so many generous and loving people in this world that would to make a donation for something that could save lives, but just don’t know about SMA! Ask your company if they match donations. Do what you can, and challenge yourself to think how you can help raise money and include others in this event. Invite friends! Do a 5 weeks to a 5K challenge with your social group. Encourage the friend that suffered a stroke to come celebrate all the obstacles they have overcome. Bring the senior athlete that has worked hard their whole life to maintain the physical health they have. Tell every person at your next meeting or gathering about SMA and Leo, and what Love Every One means. Invite your neighbors! Do you have a special contact that comes to mind that might could help us? Do you have a place you could pass out flyers or place a poster about the event? Everything will help. And don’t forget to tell them how much fun this event will be!
SMA has stripped Leo of almost every physical ability. Down to his ability to breathe and smile, and now we fear it could start affecting the muscles that control his eye movements. We have to stop SMA, and we have to do it now.
Many ongoing thanks to all of you and thanks be to God for our very blessed life and this opportunity.
runhard.org/pages/race-leo.php
