BREATHE TO DREAM

Hello,

My name is Jerónimo Reina Aguilar and I am 7 months old.

I'll tell you my story!

My mother got pregnant by me, living in the municipality of Caucasia, Colombia. During her pregnancy, she had normal controls, however, at the time of my birth (10/30/2020) I did not adapt to the environment, I stopped hearing my mother's voice and I began to turn blue.

For this reason I was transferred to the ICU, they put me on oxygen and still did not respond. Then they began to realize that he had sleep apnea.

I have Ondine Syndrome (Congenital Central Hypoventilation Syndrome - CCHS),

Because my health continued to get complicated and they couldn't identify what was happening to me, I was referred to the San Vicente Fundación University Hospital in Medellín. When we arrived, they informed my mother that she could breastfeed me - she was happy - she tried, but I was not able to suck and I began to repeat the apneas. At dawn the apneas were very repetitive and the doctors decided to intubate me.

I was in this condition for more than a month while all the medical studies were being carried out, speculating that I suffered from Ondine Syndrome (Congenital Central Hypoventilation Syndrome - CCHS), which consists in that I forget to breathe while I sleep and not I do correctly when I am awake.

Due to the risk of infection associated with intubation, they decided to perform a gastrostomy to feed me, and a tracheostomy to connect me to a mechanical ventilator on which I permanently depend to breathe.

My body was retaining carbon dioxide

Finally they performed a genetic test to confirm if I really had the syndrome (carried out in a laboratory in Spain). In January of this year we received the result, which unfortunately confirmed that I do.

The doctors continued to perform specialized tests on me and decided to disconnect me from the ventilator during the day, to see if while awake I could breathe on my own and adequately.

I can't deny you rest! because that is heavy and very uncomfortable.

It lasted for 3 months, until they detected that my body was retaining carbon dioxide (not only when it was disconnected to the ventilator, but also connected), which is harmful and could have serious consequences on my neurological and cardiac system.

Given this situation, I have the need to be monitored by a team that measures the level of carbon dioxide in my body, called a capnograph.

I need a CAPNOGRAPH, please help me

They were very difficult days for me and my daddies, but I have been a warrior for myself - because I want to live - and to be with them!

To be transferred to a REMEO Center (Venti and finally go home with my daddies, I need a CAPNOGRAPH.

Please help me raise the funds to buy CAPNOGRAPH so I can BREATHE TO DREAM!

To live I depend on your generosity.

You would make me very happy if you used the [Collaborate by sharing] button to share my project!