Leo's Story Written by his Mom, Jamie
Leovanni also known as Leo was born August 27, 2009 at 32weeks at Cape Fear Valley Hospital in Fayetteville NC. This was our second child and I thought it was probably going to be an amazing experience soon to be slightly different. On January 2009 we found out we were expecting our second child. We were even more excited when we found out it was a boy. During my pregnancy mine and my son health concerns grew, I was always having pain, bleeding, nausea, and loosing weight. I ended up having to get induced because Leo started loosing weight rapidly inside of me. He went from 5lbs 9oz one week to 4lbs 9oz next week. These were probably the scariest days of my life. They had to advise me of what to expect, had NICU and breathing nearby. I ended up giving birth Naturally on 8/27/09 @12:01am, and he got taken into NICU quickly I barely got to see him because of his breathing, His umbilical cord was tied into knots, which was the reason why he wasn’t gaining weight. Leo was born with blood in his brain, and needed help breathing. He stood in NICU for 3months, this was really really hard, having to give birth, see your child and leave empty handed without him broke my heart. A couple months after leaving Hospital, Leo started shaking and not knowing why, his therapist looks at me and said I think Leo is having seizures, we go to hospital and they monitor him and said yes he is. Leo was then diagnosed with Epileptic seizures. Months after that I took him to a genetics doctor in UNC, because His pediatrics doctor ignored my concerns that something was wrong, My son’s head was bigger then his body and he was about to be a year and wasn’t doing things an 11 month old would do. That’s when we were told that Leo has a rare Chromosome disorder called 1p36 Deletion Syndrome and 22Qduplitcation syndrome. At this moment I had to just drop to my knees and cry, I had no idea what this was and what this meant. This is when our lives changed forever, and we were expected to think the worse, because at this time there was no hope, nothing to make us feel better, They just didn’t know, they just knew Leo was the 2nd in North Carolina to get diagnosed. Because of the health conditions that come with 1p36 Leo was tested and screened for other health factors. He then got diagnosed with Sleep Apnea, Restless leg syndrome, Asthma, Tracheomalacia; he also has had several operations. When Leo was 3 years old I was told from Leo Orthopedics that because of his bones and developmental delay he would never walk. There was a time when I said I just can’t anymore with constant bad news back to back. I felt like the dream I had when I was pregnant of seeing my son playing games, playing sports with his dad, being his sisters protector, getting married and having children all got stolen from me and replaced with constant bad news of what my son will be like; to not expect him to walk, talk, They even suggested to put a G-Tube because Leo would not be able to eat solid foods and wouldn’t gain weight. I felt mad at the world for a time, and I know it sounds selfish but that’s how I felt at that moment. That dream that I thought I wanted changed, I just wanted my son to be healthy to be able to walk, talk, and show an emotional connection. And it happened. Months after finding out Leo diagnosis we started researching and found this Facebook page for 1p36 parents and family, Wow this helped me in so many ways. A group of parents that are going through what we are going through. I remember my first conference in Tennessee; this was an emotional roller coaster for me and my family. The stories parents told; the instant connection they had towards us. This was so wonderful; this was a Family, not made by blood but my choice. In the next couple of months Things changes drastically. The thing that a professional doctor told us that Leo would never walk changed, After 1 wheel chair down, 1 walker down, hours of Therapy, and faith and hope Leo started walking on his own. My family and friends have probably been our biggest supporters at seeing me through the good and bad times. Leo is such a blessing to us; He has taught us so much. Leo is now 7 ½ years old and wow he has had a growth spurt. Leo loves playing music, going on YouTube, loves eating, loves the water, and loves giving me kisses and getting tickled by me. I forgot to say he loves bothering his sisters Laila and Luciana especially the youngest one and oh yea getting into his father game system to get on YouTube. Although Leo does not speak verbally yet he does know some signs and does point to communicate. Leo is now having his 6th surgery this coming Month to reconstruct the inside of his right ear. I know that with faith it will turn out fine. Leo is a little fighter has proven many wrong, and will continue to improve.
The 1p36 DSA organization has given my family so much faith and hope, we are always there for each other and I love it. I remember the 2nd Conference we attended that was in Texas and Leo just started walking they were all so proud and happy for him. We are now going on our 5th Conference and this year it’s to Baltimore and we can not wait. We love going to see our family, to see how grown our kiddos have gotten, to see new faces, to see the speakers, doctors, and more.
Don't forget our fundraiser for 1p36dsa. 25% of the profits from ALL the sales this month will be donated to 1p36dsa.org. Shop For an Amazing Cause.
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