Seanna’s SMAS Journey

Our journey started in January 2022 when Seanna and her brother had a COVID-19 infection. A month later Seanna started experiencing a stabbing pain in her abdomen. I then made an appointment with our family GP and he arranged for her to be admitted into hospital. The Paediatrician on duty did a sonar, X-ray, and some blood and by the end of the weekend sat me down and advised that Seanna was overreacting it’s not normal for her to experience that amount of pain, and that he would do a psychiatric referral. Angry that her condition was not being taken seriously, we went home, and we tried some dietary changes, this included, cutting out dairy, then gluten, then including a prebiotic, then a probiotic. We were regulars at the Health Shop and tried every other over-the-counter remedy known to man.

Frustrated we went back to our GP, and he then suggested another admission, this time under a Rheumatologist to check for any autoimmune conditions. Seanna is unnaturally flexible and hyper-mobile Ehlers Danlos (hEDS) is suspected. We once again left the hospital with no diagnoses and by this time we were treating her pain with a Buscopan Tablet after each meal. At that point, I still remember mentioning to my husband, Nicho that I am dreading the day that Buscopan no longer works.

Fast forward to June 2023, our GP then did a GI referral to an adult Gastroenterologist and Seanna was scheduled for her first of many Colonoscopies and Gastroscopies. At this point, she was diagnosed with Severe Active Gastritis and an active H Pylori infection. We were over the moon that a potential cause was discovered and elated that it’s treatable. I remember Seanna messaging her best friend with lots of joy emojis that a cause had been found. Seanna had her first eradication therapy and started to feel a little better. This joy however was short-lived as the pain returned amplified. The adult GI then would no longer assist and did a referral to a Paediatric Gastroenterologist. The first available appointment was end of September 2023.

This time however her pain never resolved. As soon as she started eating the stabbing pain returned. We left this teaching hospital with the view that Seanna must find coping mechanisms to deal with the pain. How do you tell a then 12-year-old that she will have to sit with this pain for the rest of her life?? As is, she has already missed out on her school year and any bit of normalness.

Today, we have had many admissions under the belt, some dealing with pain analgesia, some with more investigative studies. Seanna has seen many physicians and psychologists and her only pain relief at the moment is heavy schedule 6 pain medication.

At this point, I need to mention that no one is as determined as a mother who has to see her child in daily agony to find a solution. I became a world-class researcher. My investigative skills became unparalleled. My knowledge today is unmatched. Today, I know Seanna’s surgery failed as the bypass surgery left the compression in place. This leaves food the option of both passing the obstruction and using the DJ bypass and in Seanna’s case, it seems food still travels to the compression site. I also shared her scans with a US diagnostic Radiologist, Dr James Parker. His specialty is compression syndromes and he confirmed that her scans show anatomic findings of SMA Syndrome despite the DJ Surgery.

Through the SMAS Warrior Support Group on Facebook, I found the world’s leading SMA Specialist, Dr Domingo Alvear. He has written many medical articles over the years around SMA Syndrome and has pioneered a procedure called the Alvear Procedure or Duodenal Derotation Surgery. I reached out to him and he is willing to come to South Africa to assist in Seanna’s surgery and teach South African surgeons the Alvear procedure.

You can watch a the full podcast with Dr Domingo Alvear on this procedure on Facebook – click below:

This is where I need everyone’s help.

Please help me raise the funds needed to bring Dr Alvear to South Africa and help fund her medication and therapies. This will not only help Seanna but every other SMA Syndrome patient in our country. No one should go through what we have. Seanna remains optimistic (although some days are incredibly hard) and hopes that her story will help others.

Today she wants to be a paediatric nurse to help others one day. She always thinks of others before herself.

Help me help her. Help us in giving her Life 2.0 back.