When I heard that my friend Nina’s daughter had Spinal Muscular Atrophy I immediately thought, “Why must children suffer?” It seems so unfair. Although I am sure I will always struggle with this question, reading about Saint Thérèse of Lisieux, also known as “the little flower of Jesus” has given me some perspective.. The following excerpt explains a bit of her journey:
In 1894, after six years as a Camelite nun, Thérèse realized she was still very far off from her goal of being a saint. She felt very small and insignificant, not sure how she could proceed towards this goal within the limitations of daily life in a convent. She felt very little. She understood at this point that it was through this very littleness that she had to ask for God’s help. At this time she came across a passage from Proverbs that struck her with particular force: If anyone is a very little one, let him come to me. (Proverbs,9,4) And, from the book of Isaiah (66:12-13), she was profoundly struck by another passage: As a mother caresses her child, so I shall console you, I shall carry you at my breast and I shall swing you on my knees. She concluded that Jesus would carry her to the summit of sanctity. The smallness of Thérèse, her limits, became in this way grounds for joy, more than discouragement. She gave to this discovery the name of little way, petite voie.” via Saint Thérèse of Lisieux
After I learned of “the little flower of Jesus” I thought of a photo of my friend’s daughter Malena. In the photo Malena is sitting in the middle of her room holding a large sunflower. Behind her is her power/wheel chair, a doll house and a breathing machine. As I mentioned, Malena has SMA (Spinal Muscular Atrophy) and is a very real representation of living “petite voie”. She is a small yet powerful force, teaching all who come into contact with her that even through suffering and limitations one can live in love and joy. She is a little girl with big wheels. Malena’s parents, my dear friends, Mauro and Nina are also living the little way. Day after day they struggle to bring awareness to SMA, hoping that each small step will make a difference. They sacrifice and advocate for Malena while loving her, and each other, selflessly.
One in 6000 babies are born with SMA and one in 40 people are carriers. Avery “The Bucket List” baby and her brave parent’s recently helped bring SMA into our public awareness. Sadly, Avery passed away from complications. Mauro, Nina and Malena continue to fight. To gain some insight into their lives I asked Nina the following:
What is SMA?
Spinal Muscular Atrophy (SMA) is a motor neuron disease. The motor neurons affect the voluntary muscles that are used for activities such as crawling, walking, head and neck control, and swallowing.
What type of SMA does Malena have?
Malena suffers from SMA type 2. She is able to sit but can’t come to sitting by herself – mommy, daddy or caregivers have to “place” her wherever she goes unless she’s riding her Permobile power chair.
What is Malena like ?
Malena is a very warm and welcoming little girl who is full of joy, who exudes confidence and makes quick friends wherever she goes.
What are you most thankful for?
Working for Cisco Systems and the generous health benefits this employer keeps in place for all families. Cisco, hands down, protects families as their own and it’s a very special place to work – the best in terms of values and give back.
What have been your biggest challenges?
Balancing Malena’s needs with my own needs as a wife, friend and woman.
What is your hope for the future?
I hope for a cure. I hope for Malena & children with SMA to receive drugs to keep them strong and healthy. I would love to see her walk one day but I’m a realist and that would be “icing on the cake.” Also, I hope for greater awareness to PREVENT SMA from occuring. Family genetic testing should be be a MANDATE.
How can we help you fight SMA?
We are proud to be holding our second Annual Sacramento Walk-n-Roll for SMA to be held on Sunday, October 14th from 8:00 am to Noon at the Land Park in Sacramento, CA. and are excited for this year’s event! We are looking to hopefully reach a goal of raising $30,000 this year!
To donate to Malena and SMA please go to:http://www.fsma.org/Fundraising/EventsCalendar/index.cfm?id=6846&eventRedirect=1&type=1154
For more information on SMA see: Spinal Muscular Atrophy – Families of SMA – Research Support Hope