Most of the children who suffer from an eosinophilic gastrointestinal disorder cannot eat a normal diet. They live with severe food restrictions, or are tube fed which makes it hard on physical, emotional and social levels.
The festive season can be an especially hard time for them, as many are not able to eat like their friends and family at the many Christmas parties and celebrations, nor can they experience a real Christmas dinner.
This Christmas ausEE Inc. launches its Christmas Appeal to raise funds for medical research into eosinophilic gastrointestinal disorders, with the goal to change the future for children, like Henry, suffering from these life altering disorders.
Here is Henry’s Story…
Looking back, I can see that my son’s pain started the day after he was born. He screamed all day and all night. Constantly.
Only being a few days old, the consensus was that he had colic, was hungry and had wind and was all normal for a newborn. I honestly looked at this child screaming and thought this can’t be normal, but what did I know being a first time mother?
After we took Henry home, the screaming continued. I was assured by many that he was healthy and growing so that nothing could be wrong with him. It persevered. Day in and day out of eardrum piercing screams.
6 weeks into his life, I felt like a shattered woman. Completely sleep deprived and without any answers as to why my beautiful little angel was so unhappy. Still, at this point, no one was really worried as he continued to grow…especially since he breastfed every 2 hours day and night. I was showed settling techniques from wrapping to rocking to letting him cry. Nothing seemed right and nothing worked.
3 months into his life our paediatrician put him on reflux medicine as he had a suspicion that Henry had “silent reflux”. This did nothing. We increased the dose. Nothing. We tried a new reflux medicine. Nothing. Finally we decided to take dairy out of my diet and Henry started to have some peace during the day, but the screaming at night continued with a vengeance. At this point I was lucky to get 2 hours of sleep a night…and it was only going to get worse. But our paed could see that this was in some way related to food. So we trialled many things with little success, but in the end it’s what led us down the right path.