Elann Saula was born February 18, 2011 bringing with him an indescribable joy & love to his sister and parents. At six months and one day old, an illness took hold and he began to lose weight. The next two months were a whirlwind of testing, doctors every week, and visits to the emergency room. There were no answers though, only confusion about what was happening to our adorable son.
December 1st, 2011 marked the beginning of the most terrible weeks of our lives. Elann went to the hospital and was sent to NICU almost immediately. In less than 32 hours he needed a blood transfusion, plasma, platelets, red blood cells, bone marrow, scans, and more. Our poor baby, he was hospitalized for the entire month. He was attached to so many tubes, his big sister played with toys in the waiting room, and we waited, hoping for answers. So many terrifying diseases were suggested as the cause, but none were the problem.
Eventually, they came back with "Instestinal Lymphangiectasia", a rare disease of the intestines. At least this explained one part of his illness. There was no known cause, no idea of what this meant for the future, just a rush to stabilize him with essential nutrients intravenously. 10 days later, his kidneys stopped working, his pancreas and liver weren't functioning either. Next were steroids, medicines, and more nutrients, but still no answers and no understanding of his case. The doctors were baffled. Then, one day, he simply started to heal himself. Another mystery! A month later his kidneys were back and his pancreas and liver were getting better. So many doctors worked on his case, consulting with specialists in Utah, Washington & France, but no one understood what was happening. We left the hospital with no information, just a mystery and happiness for our son. He was stable for the moment. We had one wonderful week at home before he was back in the hospital. Even at home with tubes in his chest to feed him, Elann smiled.
At this time his dad wrote a message to our family and friends, it was January 12, 2012:
"Intestinal Lymphangectasia they said."¨ a name that even doctors have a hard time saying."¨ Life isn't meant to be easy, and you didn't wait very long to realize it little Elann. "¨That month of December walking in those long, endless halls: Where parents curse their faith, holding a kid whose life is literally a string away from being taken."¨ After a short week home, you are back in the hospital with not much more explanation: Thank you all for your support and generosity, we can never thank you enough. Life has taken a big turn for us, unexpected, but real. As we follow our hearts, together we will face a new world, new language, and new page of our lives. There are still many enigmas about you my son, but one thing is for sure: Little Elann will grow big!"
After dealing with infection, sickness, and blood stabilization we were back to the hospital in March of 2012. We were expected to stay for 3 days but were there more than 3 weeks. He was not eating for more than a month before this hospitalization. After another infection that nothing seemed to treat they sent us home again. Getting his nutrition through a tube attached to his stomach 20 hours a day, there is no time to play or to learn to walk when attached to a bag bigger than him. We've never learned so quickly about medicine, infection, nursing or parenting.
The only answer or support from the doctor was "Your son is sick for sure, but we don't know what's going on, we've already tried everything. You know: Just HOPE and try another place. Just be happy he is stabilized."
I was crying, asking for help: I didn't know how to deal with this. I was a mom with no power in the world. Facing my son crying with pain, looking at him, giving my love and saying "I don't know what we can do Elann, I'm sorry." There may not be a worse feeling in this life.
In April we made our first contact with UCLA. In June, after they finished reading the thousands of pages in his file they said, "Your son had a very complicated and special case. We need to see the biopsies he's had to get a better picture". After collecting them from Utah, etc, our doctor's office sent more than 34 biopsies to UCLA in 3 envelopes.
Today August 14, 2012, we spoke with one of his doctors. UCLA needs to hospitalize Elann so he can see
five different doctors there and do more tests.
It will be a minimum of 5 days they say.
Here we go, OUR HOPE IS HERE.
While the prognosis is unknown due to the rarity and unusual
circumstances surrounding Elann's case, we do know this: Elann is a fighter,
it's evident in his sweet smile and playful face. Little Elann will grow big.
Help us help Elann in his fight for a mystery cure. Please: Unfortunately insurance does not cover all the expenses. Hospital co-pays, medical supplies, nurses, medication, doctor visits, the 3 hospital stays we've had and the future at UCLA, 9 surgeries already: The list goes on. This site is dedicated to Elann, and helping him, his big sister and his parents get through this. Allow them all to have a normal life one day.
Whether its $5 or $500, every dime will help! I know that our little superhero Elann will want to give each and every one of you a great big hug, a kiss and a smile as soon as he can. Thank you: So very much for your love and support!!!!
PS - if you prefer to use PayPal, donations can be sent to email address: [email redacted]
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