Day #1827
Dear Bram, Today is day #1827. Today is the day that has been marked in my calendar for years. The 16th of October 2020. It is the day I have been looking forward the most in my entire life. It … Continue reading Day #1827
Author: Jeroen Sengers
I am Jeroen Sengers, 41 years old and living in Horley, United Kingdom. Married to Laura. We have 3 kids, Max (8 yrs old) and Bram (6 yrs old) and Anoek (1). I work as a captain for easyJet. In my spare time I enjoy computer programming. But what I enjoy most is spending time with my wife and kids.
Shielding, MRI and growth hormones
Dear friends, Time for a well overdue update on Bram. The last couple of months have been very different. Due to COVID-19 Bram has been advised to shield. So since March 17 he has been at home with us. And … Continue reading Shielding, MRI and growth hormones
Look at me (Video)
Some doctors/therapists said he would never walk…..Look at him now! I am biased, but Bram you are totally incredible. Keep fighting and inspiring us! PS: If Video playback is stuttering download the video Continue reading Look at me (Video)
Pneumonia
Dear friends, We are about to start our 5th night with Bram in hospital again. Last week he fell ill and on thursday we took him to our local hospital where he was diagnosed with pneumonia (longontsteking). He has been … Continue reading Pneumonia
MRI, seizure and respiratory infection
Dear friends, Bram’s amazing story continues….. with the good, bad and downright ugly. It started all late september with a routine sleep study. Bram and I stayed for an overnight sleep in Great Ormond Street Hospital to test Bram’s respiratory … Continue reading MRI, seizure and respiratory infection
Seizure
Dear friends, With the school year coming to an end last week we were looking forward to 6 weeks of relaxation. It started off well and we celebrated Max’s 7th birthday. He had a nice day and got lots of … Continue reading Seizure
Anoek
Welcome in this world! It is our great pleasure to announce the birth of Anoek Laura Sengers. Our daughter and sister was born this morning at 11:50 weighing in at a healthy 9 pounds! After a 2 day wait in … Continue reading Anoek
lots of appointments
Dear friends, Bram has had a busy couple of weeks with 5 visits to Great Ormond Street Hospital. He is settling in at school and currently attends 3 days a week. We hope that he will be able to attend … Continue reading lots of appointments
Surgery #21 (and #22 planned)
Dear friends, Our hero had surgery again yesterday procedure number 21! To reduce drooling Bram had botox administered to his saliva glands. Surgery went well and after a long day Bram and I returned home at 2300. In the next … Continue reading Surgery #21 (and #22 planned)
Our hero goes to school
Dear friends, Today is a special day for us, a very special day. After a few settling in sessions over the last couple of weeks, Bram is having his first day at school today. Our remarkable little boy, but great … Continue reading Our hero goes to school