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This fundraiser ended on 10/22/11

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The Family & Friends of Marky Morton Jr are uniting to raise money for his battle against Rohhad an extremely rare syndrome that's incurable

Marky Morton Jr is fighting the battle of his life against Rohhad, it is an extremely rare syndrome that's incurable, no treatment or prognosis. Rohhad is Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD syndrome) is a very rare disease affecting approximately only 75 cases worldwide. Patients with ROHHAD, as well as patients with Congenital Central Hypoventilation Syndrome (CCHS)[1] have damaged the mechanism governing proper breathing. ROHHAD syndrome is a disease that is potentially lethal and incurable. Marky remains in the Pediatric Intensive Care Unit requiring multiple critical care therapies.
Our 3 year old son Marky was just diagnosed with Rohhad in July 2011...only 75 cases worldwide and he makes him the 76th child with Rohhad a life threatening and fatal syndrome. He has now been in the PICU at Children's Hospital in Pittsburgh since July 20th The first two weeks he fought for his life. He went into respiratory arrest and coded several times, we almost lost him from pneumonia. Everyday was a challenge to keep him alive. He was intubated for over a month and wasn't able to breathe without help. Doctors decided he needed a Trach to ensure his ability to breathe. He got a tracheotomy on 8.22.2011.
Marky is the second youngest out of 7 children .He was born on March 19, 2008. A beautiful 5lb 12oz healthy newborn. He was the light of our lives, all his brothers and sisters just loved him and spoiled him! He was a normal wonderful infant and toddler he loved to go the Pittsburgh Penguins games with mom, dad and pappy. Sidney Crosby is favorite player! Every time we passed the arena he would say " let go watch hockey!" He also loves his Disney Cars and Trains. If you knew Marky you would see him carry his baskets of toys nd they were nevaer far from him. His basket of toys even slept in bed with us at night!
January 2011 he weighted about 27 lbs, February and March came and he started gaining more weight than he normally would. March he weighted about 36lbs, at that time I took him to his Pediatrician doctor and they referred Marky to Children’s weight management clinic. In my mind I was thinking was I feeding him too much? I started to get concerned and fed him healthier foods, Still more weight. April 2011 he weight about 42lbs and he started having breathing problems at night, long pauses and coughing and chocking and apneas he was also aspirating stuff in his lungs. .Also I noticed his eyes were going outward and he would have pauses while looking up. I thought he was just day dreaming. Genetic Testing was in the process and we were just waiting to hear something. 4 to 8 weeks we had to wait May and June he got up to almost 60 lbs and during that time Marky got weaker, more fatigued, more tantrums, slept more and more. He would sweat uncontrollable at night and I kept one eye open all night to make sure he didn't stop breathing for to long.
Wednesday, July 20, 2011 he weighted 67 pounds that is the day he started to fall over, never trying to catch himself. After watching him closely he just kept falling, I was going out of my mind wondering what is wrong with my baby! So that’s when we were off to Children’s hospital ER.
He was admitted ASAP and a ton of test were done one right after the other. His oxygen sensor read 60...60?? His CO2 levels were in the hundreds??!! At that level your blue and passed out but not Marky, he was talking and sitting there like nothing was wrong. EKG showed enlarged heart due to pulmonary hypertension. and a EEG showed seizures about 20 to 40 a day. So then he had to get an MRI done they intubated him and sedated him to keep him still. That was on July 21 and he is still intubated and relying on a ventilator. He got pneumonia the 2nd day of being in the hospital. His lungs partly collapsed and went into respiratory arrest a few times. I watched my baby turn blue and suffocating and I could do nothing. Day after day was pray for my babies lungs to get better. All I could do for him is hold his hand and play with his hair. I prayed to God every minute to please don't take my baby from me.
August 2nd the doctors found a tumor around his Adrenal Gland, about the size of a quarter, when he got stronger and they remove his adrenal gland and tumor, it came back ganglineromia which is benign.. My poor lil man is on so many medicines and hooked up to so many machines all we can do is hold his hand and play with his hair. He ended up getting MRSA in his lungs and turn into pneumonia. He developed an allergic reaction to antibiotics to treat the MRSA it looked horrible and painful.. We are now waiting to get transferred to the Children’s Institute.
I ask for you to donate towards Marky’s battle with Rohhad. The obstacles and challenges facing Marky and his family needing specialized medical needs are immeasurable. The physical, emotional, psychological and financial toll surrounding their situation can escalate to insurmountable levels.
We greatly appreciate any help you give or just a prayer for him too.
You can mail you donation to:
Miracles for Marky Morton Jr.
394 Ambard Avenue
Pittsburgh, PA 15202
or
Citizens Bank care of:
Miracles For Marky Morton Jr.
4701Liberty Pittsburgh PA 15224

Thank you and god bless you all! Mailinh & Mark Morton
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