a charity dedicated to improving lives affected by eosinophilic disorders
My son Benji is 10 years old and suffers with EoE and dysphagia. He had been poorly for a while and he was finally properly diagnosed in December 2018. The first two local GP's I was taking him to were telling us that it was all in his head! Benji had dropped 4kg's at this time and he was terribly unwell and unable to swallow properly. I refused to believe that it was all in his head, so I went to a different doctor's surgery and I got a third opinion. I even went as far as taking him to see a psychologist. The psychologist didn't believe that it was all in his head but by now, Benji was suffering with a certain amount of anxiety due to his experiences. The third GP took the necessary time and steps in getting Benji properly diagnosed. He had an endoscopy early December 2018 and the rest is history.
As a single parent (just being a parent in general managing your child's disease) I struggle with my son's condition each and every day and I often feel alone with this as there is not a lot of support out there for me. Thank goodness for ausEE's Facebook page!
Over the last few years, Benji has missed out on a lot of school, particularly after his diagnosis. I have not been able to work for the past 2.5 years due to the constant care. I was really struggling with work life, struggling with Benji's condition, struggling with him being constantly unwell and I was struggling with a home life balance. The
stresses and strains of the diagnosis of the disease and then having to
cope with the stresses and strains of the disease, affected my marriage
greatly. My last boss was struggling with me being off so much or taking off from work so much that I had no choice in the end but to quit my job so that I could look after my son. Due to Benji being constantly poorly and due to the many doctor/specialist/hospital appointments, some days are a battle for both of us. We both often feel isolated, deflated and disheartened. I often feel like a nurse and feel like I have been in home isolation for the past 2.5 years, way before the COVID hit! Benji feels like he is always sick and often cries over this.
When Benji was first diagnosed, he lived on a diet that consisted predominantly of liquids, 80% of his diet was liquid due to the severe dysphagia.
Emily - Benji's Mum
I was constantly in the kitchen preparing meals for him from scratch and I was constantly feeding him, sometimes up to 12 very small meals a day! I felt like I was having an affair with my Nutribullet, lol. I managed to help him put some weight back on, but he did not thrive for about 12 months after diagnosis. School lunches at this time was challenging and for Benji, school was challenging in general. He has had to endure so much for a 10-year-old boy, he absolutely amazes me to how resilient, thick skinned and tough he is! Kids at school have made fun of his condition, his food, his eating and drinking habits and there certainly is a lack of understanding on the teacher's part too. Vagueness and a lack of confidence at school is misconstrued as being naughty which simply is just not true, and it just adds to the stress of learning at school. There definitely needs to be more awareness made in the schools (the educational system) with this condition and there needs to be more compassion too. I feel like my son is slipping through the cracks of the education system because of his condition. The slightest sniffle from his allergies and he is sent home and not allowed to go back until it all clears up! Good luck with that! Benji is constantly being told to hurry up and eat his food from his peers and he really struggles at birthday parties and other gatherings as he is restricted by food, takes a long time to eat and has a challenging time getting food down his throat. It is very disheartening for him and he often feels embarrassed.
I have even been blamed for his condition by someone who refuses to acknowledge and believe that EoE exists, it is very upsetting. If I could take it all away for Benji, I would do it in a heartbeat! There needs to be more compassion towards others that are suffering with this debilitating disease and less judgement from others that don't even know or understand the disease. I am currently looking for work but will not be able to go back full time as I need to be there for my son, his health comes first. Benji manages well with his EoE and dysphagia, he has grown taller lately and has maintained his weight, even putting weight on. I am so proud of him each and every day and I love him so very much.
Story shared by Emily (Benji's Mum); July 2020
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