IN HONOR OF THOSE WHO PASSED AWAY
If you have a loved one you would like added please contact us
10/29/1992 – 5/3/2014
Alecia’s life was cut short at the age of 21. She fought for five years before SMAS and her other co-morbid conditions took her away from her loving family. We honor her memory by naming the memorial grant after her. Alecia’s mom remains a constant in the SMAS community and is a huge supporter of others who have lost their loved ones.
12/9/1993 – 4/17/2016
Timmy Pettitt was a super lively, joyous, loving and beautiful person. He lived with cerebral palsy, severe learning difficulties and epilepsy from birth, and was non verbal, but loved life and was passionate about being read to, socialising and being on the move. He developed signs of agitation and distress shortly before turning 16, and many of the things he had previously enjoyed quickly became too much for him. It took us 2 and a half years to find out that Timmy had SMAS, and he underwent the DDJ surgery the same week. He made a good recovery for a few months but sadly all his symptoms began to return. The last 18 months of his life did not hold much joy for Timmy, but he continued to love his family and friends around him, and insisted on very many books being read to him. He showed extraordinary bravery in the face of chronic and severe pain that he could not express in words, and ever increasing fatigue, nausea and weight loss. He was loved by all who met him and we, his mummies, will is him always and forever. In the words of one of his favourite books, “love like starlight never dies”.
Kimberly Gail (Hendricks) Hallauer
“Kimberly was a beautiful baby, lots of long hair, a wonderful mother and wife. She was very caring and loved her 2 babies so much and even her fur baby. She got sick and was diagnosed with SMAS when she was 28 years old. May of 2012 she had 3 surgeries on her stomach and it did not help, and she had her gallbladder out and a hysterectomy; nothing helped. All the time she loved the Lord with all her heart. She was our only girl, she was happy in whatever she did, and never complained about being sick even when she had a PICC line, J tube, G tube. She just wanted to live for her babies, but God needed her. She went home to be with the Lord on December 4, 2015. She will always be missed and forever in our hearts.”
“He got SMAS from severe Lordosis. His spine was smushing his intestines so food couldn’t leave his stomach. He went thru g/j tubes and central lines. First diagnosed in 2010. We learned problem with doctors is when he could not eat anything they called it SMAS but when he could eat (thru g or j tube) they would not recognize he had SMAS. So he had to get in severe condition for them to consider SMAS surgery options. In 2012 they finally did a procedure of moving his organs away from his spine /SMA . By this time his gallbladder had stopped working and was sludge, he was in severe pain. After surgery his stomach took time to work again (moving food) thru pylori and into intestine. He remained on medicine for 2 yrs after to help the motility of his stomach. He had a great 2 yrs after surgery. Unfortunately he passed away on June 13, 2014 at the age of 15. My wish is that they would recognize SMAS sooner. He will always be remembered as our Super Hero for his positive spirit, strength and smiles he gave his family and the world. Forever in our hearts, gone but not forgotten.”
Lisa Marie Brown
10/30/1982 – 1/21/2017
Lisa fought for 5 long years with SMAS and Gastroparesis. She made worldwide news raising awareness for her syndromes. Within the SMAS community, Lisa was known for creating cards which is why we now have the Lisa Brown Card Campaign. She always new how to bring joy to others and is greatly missed. “Forevermore”