Eli’s story

By Meital, Undiagnosed, malignant high blood pressure, recurrent respiratory infections, hypotonia, developmental delays, behavior issues, reflux, United States, March 21, 2021

Love is the answer

Our journey started on January 16, 2011 when our son Eli of 4 month old suddenly collapsed at home. He was taken to the ER. He was intubated and resuscitated and all of the sudden our baby, that was completely fine and healthy, was in an extreme and super delicate situation where the prognosis was uncertain. Thanks God our son was able to survive and here we are nine years later, still fighting in order to get a diagnosis. He suffers from high blood pressure, recurrent respiratory infections, hypotonia (low muscle tone), reflux, developmental delay and a distended belly.
These past nine years have been an incredible journey and I wanted to share with you what I have learned.
I realized that I could see my life from a very dark, painful, unfair, why me?, sad, angry, frustrated and scary place… why not? We live now in nobody’s land, in a place where maybe just a few people can really understand us, where sleeping a whole night without waking up doesn’t exist, in a land where we spend more money on medications than on food and clothes, where we visit doctors more often than going to a movie, where we spend more time talking on the phone with the insurance company than with a friend, where doing therapy is a must in order to progress, where you need to keep going no matter what, where your son can scream of pain and you can do nothing about it, where sometimes you feel so desperate that you just want to disappear!
We’re living in a world full of disappointments and frustrations, in a world that can sometimes get pretty slow…but I also realized that I’m in a world where people care, they may not understand us 100%, but they care and they want to help. In this world you realize that you are stronger than what you think you are, this world is ruled by love and compassion, strength and courage, vulnerability, perseverance, hope, grace and gratitude and this is the world that my son Eli had through me. This is the world I’m choosing to live in.
I realized that for every event in our life we have a choice of how we are dealing with it. We can live in pain and fear or we can live with love and gratitude. There are ALWAYS two sides. When we understand that life doesn’t happen to us, it happens FOR us, is when we will have this incredible sense of peace and release. It is all about the meaning that we give to the events that happens in our life. It is where your focus goes. You own your world so you can control the meaning that you give to it.
I want to finish with a big THANKS to all the people that I know and that I don’t know that had prayed and is still praying for our son, that brought us food to the hospital every day no matter how long we stayed there, for all the phone calls, text messages that helped us to feel support and gave us the strength that we needed in order to keep going. To the new people that I have met in this growing process and that have thought me new ways of seeing life. To my husband and my kids for having so much patience with me in this roller-coaster of life and of course a huge THANKS to my teacher, to my fighter, to my son ELI for this incredible lesson…. “Because you are amazing just the way you are”!

 

*Find others with Undiagnosed diseases on RareConnect, the online platform for people affected by rare diseases

Share this

Share your photos, videos and your experiences!

Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

Stories Of The Week

My family My family

Xander's Journey finding a cure

Yohanna, SLC6A1, United States, March 1, 2021

My name is Yohanna. I have a 3-year-old name, Xander. He was born healthy, and everything was great until he reached six months. I noticed he was not getting his milestones, and of course, I was conce...

Mia Mia

Mia

Maja, 1p36 deletion syndrome, Croatia, February 28, 2021

My daughter Mia was born with congenital cytomegalovirus infection and from birt we new she will face a lot of obstacles in her life. We were told she will never walk, talk etc. But she was little war...

SuperBouli SuperBouli

Story of SuperBouli

BOULI, Sandhoff disease, infantile form, Lebanon, February 27, 2021

SuperBouli for rare disease day 2021Read my story or watch the video to know why I am superRarehttps://youtu.be/Rw4hV_sk6VQHello!!! I am Bouli, and this year, on the 28th of February, the rare disease...

Photography credit: Oumayma B. Tanfous Photography credit: Oumayma B. Tanfous

Keep on Smiling

Maria, Beta-thalassemia, United States, February 25, 2021

Keep On Smiling“Keep on smiling” the young doctor said to me at an impressionable age of ten. Those words, at that time, influenced the rest of my life. I was born with a rare disease, Beta Thalassemi...

On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling. On my Instagram-account (@bibi_wheelchair_traveller) I raise awareness for the disease ALS, I share my thoughts on disease and disability and present our way of wheelchair-traveling.

"Juvenile ALS" occurs in less than 1 out of 1 million people

Bibi, Amyotrophic lateral sclerosis, Austria, February 24, 2021

Hi, I’m Bibi, 32 years old, from Austria (Europe) and was diagnosed with ALS (Amyotrophic Lateral Sclerosis) at the age of 18.My first symptoms started to show in 2005 when I was 16 years old. I notic...

Hagamos visible las enfermedades raras... Hagamos visible las enfermedades raras...

Nahiara... el amor en persona

Claudia, Williams syndrome, Argentina, February 24, 2021

Mi nombre es Claudia, mamá de Nahiara,  ella fue diagnosticada a los 7 meses de edad con Síndrome de Williams, una detección en el cromosoma 7q11.23. Dentro de las características principales de éste ...

Palden and Mom Palden and Mom

The Glimpse into Palden's Journey as the First SMA Patient of Bhutan

Ugyen, Spinal muscular atrophy with respiratory distress type 2, Bhutan, February 22, 2021

Palden is a 12 year old girl from Bhutan. She was diagnosed with Spinal Muscular Atrophy (SMA), Type II, at the age of 9 months, as the first case and one of the only two diagnosed in the country. SMA...

Laurenne in Wellington Laurenne in Wellington

You have what now?!

Laurenne, Panhypopituitarism, Hypogonadotropic hypogonadism, New Zealand, February 10, 2021

Hello to everyone reading this, my name is Laurenne, and I was born with congenital Panhypopituitarism (CPHP), and Hypogonadotropic hypogonadism (HH)It briefly means that all the hormones that a funct...

Yasmin ElSamra & mama hanaa elsadat Yasmin ElSamra & mama hanaa elsadat

Yasmin ElSamra left a legacy

Yasmin ElSamra, Epidermolysis bullosa dystrophica, Egypt, February 6, 2021

Epidermolysis  Bullosa (EB) is a genetic condition that causes the skin to be fragile, blistering easily. Blisters and skin erosions form in response to minor injuries or frictions. Mutations in the C...

X

Share your story




(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.