08/03/2026
We started this company with one goal. Make it cool to drool.
Weve taken on alot of idealisms and approaches over our few short years. One thing will never change. Making 1P36 Deletion syndrome as well understood and as well approached as all the other conditions we already know about. They arent something to fear and they damn sure deserve our best.
This is MJ's Story and we stand with our friends from the other side of the world. This is an amazing family, and his parents are two of the most kind, fierce and openly strong people we have the pleasure to call friends. His sister is his world, and she just wants her little brother to be okay so they can play and cause havoc.
Please take a moment to see MJ and his story.
HandiCrip is behind you!!! In guidance or violence, we are here to be seen heard and understood.
An open letter for everyone to share, and anyone who may be able to help.
Meet MJ, my 3 year old Son from Wexford. He is bright, bubbly, adventurous and absolutely hilarious. MJ also has 1p36 Deletion Syndrome.
Recently, MJ has had a tonsilectomy, adenoids and grommets surgery cancelled the week before it was booked, because he has 1p36 and hasn't seen Neurology yet. Despite having a clear MRI and EEG, ECHO and ECG.
In January 2024 the Surgical team in Crumlin discharged MJ until he saw Nephrology and Urology. He needs a surgery that they werent willing to do until he saw a specialist who could then refer him back. MJ has been referred to these 2 specialists since a hospital admission in October 2023, at 6 months old due to recurring UTI's.
I will be contacting his Pediatrician here in Wexford again tomorrow.
My Son is left screaming in agony due to his need for this surgery. He is STILL suffering from recurring double ear infections and tonsillitis, even during Summer months.
These are not open heart or brain surgeries. They are pretty basic in my non medically qualified opinion. Surgeries that are carried out all day everyday. Yet, I am left with countless sleepless nights holding my Son as he screams in pain, agony.
I was recently contacted and asked to go on a radio station to discuss his ENT surgery being cancelled. I felt it was a bit hasty. You best believe I will be contacting them with a change of mind tomorrow and going straight on.
I am asking everyone, wherever you are in the world, to PLEASE, like, comment SHARE, tag media outlets, politicians, ANYONE you think may be able to help get me my Son the help he needs.
I fear I have been too polite for too long. And its been to MJs detriment.
MJ has a Rare Condition. He is not unique, he is not made of glass, he is not scary. He is a human fu***ng being suffering all of the time because of this countrys waiting lists, lack of services, and Consultants blatant fear of a 3 year old.
I am due to start 4 weeks of Radiotherapy for Breast Cancer this week. I am willing to not go to those treatments to get my boy sorted.
I am a Mother at the end of my tether, my next option is protesting in Our Ladys Hospital Crumlin and not moving until he is seen. And please believe me when I say I will do it.
Please, anyone, please help us ππππ
Amy 0879411659