Unique stories
“Together is my favorite place to be” Theo on his way into life
We are on our way to St. Tönis in the Rhineland.
Theo lives here with his parents Pia and Nico.
There is a baby carriage in the hallway of his home and the cozy living area reveals that a little person has moved in: a few toys, a crawling blanket and lots of baby bottles.
On the wall are photos of a tender little boy with a broad, mischievous smile.
This is Theo.
Amidst the snapshots of the young family, we read the Rhinelanders’ motto for life.
“Together is my favorite place to be”. Now we’ve become curious. About Theo and his very special story. Who is Theo and what is he particularly good at? “Laughing – that’s what Theo is particularly good at,” Nico blurts out immediately. And he does it with his whole little body. He claps his hands and feet. Theo is an outgoing, funny little fellow who is almost exactly two years old. He loves people and they love him. “He makes us happy!” says Pia. If he wasn’t such a fun-loving boy, what Pia and Nico have experienced over the last two years wouldn’t have been so easy. He has made them strong for a journey they were not prepared for. He gave them courage and made them the people they are today. It all started with a normal pregnancy of their child. In the middle of the Corona period. There were small signs that Theo was not very big. This was followed by a premature, complicated birth and subsequent hospital stays for the little newborn. And he didn’t really want to drink. He found every sip difficult and his birth weight didn’t want to increase either. Nothing to worry about, the doctors reassured us. But the little man didn’t regain his strength and he was repeatedly hospitalized with lung infections. A difficult start for everyone. Now just carry on. Together. “Together is my favorite place to be.” Friends and family throughout the village helped them through this time. After 7 months of justified concern that something might be wrong with Theo’s health and development, we finally had some certainty. An MRI revealed that Theo had multiple cancerous tumors in both eyes. Bilateral retinoblastoma. A shock for the whole family. “That was the beginning of our journey in Essen,” says Pia matter-of-factly. Due to the coronavirus protection measures, the hospital regulations never allowed both parents to be at their son’s bedside during inpatient stays. They were on their own. Anger, fear and so many questions. “It was my worst time!”, favorite place to be.” Friends and family across the village helped you through this time. After 7 months of justified concern that something might be wrong with Theo’s health and development, we finally had some certainty. An MRI revealed that Theo had multiple cancerous tumors in both eyes. Bilateral retinoblastoma. A shock for the whole family. “That was the beginning of our journey in Essen,” says Pia matter-of-factly. Due to the coronavirus protection measures, the hospital regulations never allowed both parents to be at their son’s bedside during inpatient stays. They were on their own. Anger, fear and so many questions. “It was my worst time!” Deletion syndrome had been diagnosed.
Its 13th chromosome is only half formed. This is also where the RB gene is located, which can mutate into an RB disease. Q13 is a very rare diagnosis and there are few explanations and research approaches. This is very sobering for Pia and Nico. Everything takes time. Because Theo is a little person with a disability due to Q13. Aids such as a high chair adapted for his back, a special car seat or a Theo-friendly bathtub improve his quality of life. He practises speaking, swallowing and crawling in the various early intervention programs. He finds this exhausting and a bit silly. Fortunately, he is a little stubborn and very strong-willed, even if he rolls around the room with great difficulty. He gets where he wants to go – by a different route, he doesn’t need to compare himself with people of the same age without the illness. He attends an integrative toddler group and soon a forest kindergarten. His childminder goes into raptures when she talks about Theo: “He’s an enrichment for us. The whole group benefits from Theo.” He should experience a normal everyday life and be happy. Theo is just the way he is. And he is wonderful with his infectious laugh. The fear thing remains for Pia and Nico. Fear of having to continue to beat cancer, fear of letting go, fear of the future of this little son? They found help and support for their worries at KAKS right from the start. Nobody has to explain anything here. KAKS was simply there. It listened. Pia still gets goosebumps today when she thinks about the many conversations they had back then. It was here that they learned to let go of their feelings and talk about their illness. Pia and Nico and their cheerful Theo are now a very active part of the KAKS family. A Q13 chat group in the KAKS RBWorld app is a safe place for families with a similar diagnosis to Theo. Here you will find families who have been confronted with the diagnosis of RB and Q13 for some time. And others who have recently been affected and don’t know what to do next. Together is my favorite place to be. It’s good not to be alone. The parents’ greatest wish for their life-affirming son: Theo should learn to walk, take an active part in life and never lose his smile. To live a normal life and not be treated differently to other children. Pia and Nico have become different people because of Theo. They are more relaxed parents and take a closer look when people from this society are not seen. They have a favorite place in their hearts and in St.Tönis complements Nico. Theo has enriched their lives and given them a sense of cohesion and love. “I’ve never loved anyone as much as I love my son! It’s a whole new feeling. It’s crazy what a child makes of us.”
