This week, Inga is undergoing another series of tests as part of a clinical trial. 538 days of treatment are already behind us. 538 quite difficult days, full of sacrifices, travels, examinations, meetings, documents. During these 538 days Inga had 262 visits with specialists (we are shocked after we counted!!!), including all doctors, physiotherapists, hydrotherapy and hippotherapy.
These are also lucky days, because Inga is no longer weakening, which would be perfectly normal with her disease. It is 538 days filled with the hope that one day Inga will wake up very strong and get out of bed on her own. We know that the medicine eliminates the cause of the disease (lack of SMN protein), but it is not able to repair overnight the havoc that SMA has already caused in Inga’s small body. However, we are still waiting for improvements, we exercise, massage, rehabilitate and build a patience wall every day in anticipation of a miracle.
There are days when all our hard-earned patience is shattered. These are the days when Inga also loses her patience and asks: “Mom, will I be able to ice skate this year?” It’s so hard to wait and watch Inga trying so hard and her muscles being still weak. So we exercise even more intensively, because this is the only thing we can do for her. Although we’d love to just give her our muscles…
Over the past 538 days, Inga has grown 15cm and gain 2.5kg (we know exactly because Inga is constantly examined during trial). It’s hard to imagine what state Inga would have been if she hadn’t the treatment. Such a large increase with constantly weakening muscles could completely weaken her. It is possible that she could not crawl or walk in splints completely. She might need respiratory support at night. Such thoughts again allow us to rebuild patience while waiting for Inga’s strong muscles.
We really thank all those who support us and believe that Inga will walk one day. We fight for it every day!