Embracing parenthood is one of the best things a couple gets to experience and truly is God’s biggest blessing. Kayla and her husband, Kellen, could not wait to hold their baby in their arms when the doctors told them they would be parents again! They were equally excited and overjoyed like the first time and waited for June 2017 to arrive, so the baby could make them a family of four.
The couple had two boys under two now, and a puppy was their family’s newest and loveliest addition. The family resided in South Dakota, where life was busy, but it was as peaceful as they wanted. The parents were happy seeing their children grow and learn; however, the delay in Crue’s learning and his firsts had been a concern for them, which they ignored. He also contracted ear infections frequently and took her first steps late, when he turned 16 months old. The baby showed little interest in books and new things like other babies, but even after repeated visits to the hospital, the doctors kept reassuring them that the child was terrific and would catch up.
As time passed, rather than the concerns getting better, they kept growing as there were delays in his speech, and although he could say a few words, stuttering was present. Moreover, chronic diarrhea had made Crue weak, and he lost several pounds—the developmental challenges kept growing. The parents’ concerns got real when they saw Cru’s extended belly. The condition was not normal!
After a visit to the hospital, Crue was diagnosed with an enlarged liver, but the doctors, too, seemed confused, as no clear explanation was given. The couple was also referred to genetics, which indicated that the problem was severe and the doctors were not able to diagnose it through minor tests. The call the couple received on 13th October left them shocked and heartbroken as Crue’s test results were unsatisfactory. His urine showed high levels of heparan sulfate, so a buccal swab has to be done.
The next six weeks were all about patience and payers, and later, the baby was diagnosed with Type A Sanfillipo syndrome. It was rare and the most aggressive form of the disorder, with one of the most adverse side effects that children often tend to lose the skills they have learned over time. Not just this, the doctors also warned how Crue could suffer seizures and his movements would be abnormal. The information was too much for the parents to process until the worst part of the conversation came. The doctor continued telling them how the chances were high that he would pass away in his teens.
Kayla and Kellen would see their child in pain and eventually die, and they were so helpless that they had no other option but to go through the pain. It felt like their world had shattered, and all that they dreamt of for their children was all gone in vain. The parents were excited to see Crue’s milestones, but realizing that he might never be able to do most things in life was painful. The doctor wanted them to accept that as time passed, they would see the condition of their baby decline, and it would end up in the worst heartbreak the couple could dream of. Kade and Kai would lose their younger brother, whom they adored the most, at such a young age!
Since the diagnosis, every day brought new struggles as everything for Crue, from school to learning basics, is a challenge, yet not just the parents, but his brother, too, stands firm with him. Sanfillipo is a disease caused by a gene defect in a single gene, yet it changes the entire mechanism of life. This is how fragile life and human beings are! The damage done by the disease can not be reversed, nor can the disease be treated; however, the family has decided not to give up on their lovely baby. They fight together to spread awareness through Crue’s name, and the family holds on tight to each other, believing they’ll make it through it all!
