Team cure Sebastian
Donation protected
My name is Cynthia and I'm the mother of this handsome two year named Sebastian.
My journey began September 12,2014. He was born a full-term baby via C-section and weighed 7lbs 13oz and 19in.
When Sebastian was born he had to be resuscitated. Doctors say he was floppy and gray and not breathing anymore. They also notice his chest was abnormal. It was short and narrow. He was immediately intubated and placed on oxygen and transferred via air to a hospital nearby with a Neonatal intensive care unit (NICU).
Immediately arriving there genetics were called in for evaluation. X-rays revealed he had bell shaped lungs and his chest wall was narrow. Aside from this he also had failure to thrive so a NG-tube was placed for feeding. Seeing my son on oxygen,a nose feeding tube and cables everywhere was devastating.
By far this has been the worst moment I have ever lived. I knew something was wrong because everyone rushed in the room i felt so helpless I couldn't move. I just kept asking "why isn't my son crying?"And no one answer. Then my brother said he's ok but blocking my view. I could see in his face how frightened he was. He was changing colors. I knew something bad was happening. Not being able to see my baby, hold him and give him a kiss was really hard. All I had was a picture of him that my beautiful nurse took so i could calm down. I couldn't move Let alone not being able to be by his side due to my C-section.
I remember like it was yesterday I couldn't even hold a conversation without breaking into tears not knowing whether my son was going to survive. I felt my heart was dying the pain is unexplainable.
Once discharged I immediately ran to his side where I sat on a hard chair for hours and hours until visiting hours were over. I would come home in tears and probably called the nurses every 5 minutes. We were released 5 weeks later.
Doctors had no idea what was going on. He was tested for CF and Jeune Syndrome both negative we hit a dead end. Once home I started noticing new things like he would arch a lot. He would have a bowel movement right after his feeding and it had a very strong smell that I didn't think was normal. His pediatrician referred us to a Gastroenterologist by then he must of been like 9-10 weeks.
Our Gastroenterologist determined the arching was because he had acid reflux. He placed him on several medications to control it and said it was a big factor why he wasn't taking formula by mouth. He also noticed he had no neck control nor could do tummy time. He was very concerned.
Referrals were put out for physical therapy and occupational therapy. By this time I was seeing so many different doctors.
As days went by many test that were ordered during our NICU stay were coming in. One in specific was Pulmonary's test his report indicated he had Thoracic insufficiency and hypoplasia which these diagnosis could become life threatening as well. More test were ordered and determined his blood counts were low. He was severely anemic and needed an emergency blood transfusion. GI and genetics thought of a rare syndrome called Schwachman diamond syndrome but it would be weeks before results were in.
By December he was weighing in 7lb 01 oz his weight was deteriorating he was 3 months already. He had to get admitted for another transfusion and failure to thrive to decided whether or not a G-tube had to be placed. Once hematology got involved they recommended a bone marrow biopsy to confirm blood results for SDS. He was inpatient for 48 days and a total of 189 to this date. Results came in confirming their diagnose SHWACHMAN DIAMOND SYNDROME and g-tube placed. Although his feeding were by g-tube his stomach could only tolerated a very small amount so feeding had to be spread around the clock every 3 hours to get sufficient calories and it's still this way till this dated. Sometimes I run on no sleep for days but God is good he gives me strength to keep going.
Soon after his diagnosed his hair and facial hair started falling off it was so scary all I knew from this disorder was that it can lead to leukemia and that Kids can have physical and mental delays along with a weak immune system. My son has almost all the medical conditions that come with this disorder. He was physically delayed. Failure to thrive, Anemic, neutropenia, thoracic insufficiency, hypoplasia, pancreatic insufficiency, and the list goes on.
Thanks to Ms.Karsti at Tichenor Orthopedic my son is caught up. When we started in February of 2015. He had no head control until 7 months. Slowly with her love and care he improved so much and began meeting his mile stones. It was a lot of dedication and time. I would drive out to Long Beach four days a week for 30 minutes of physical therapy and 1 of occupational therapy.
It was hard actually not knowing if I was doing everything i could for him thats when my cousin reached out to Schwachman diamond foundation and they have been so helpful there support team is phenomenal. I have learned so much on how to care for my son. The do's and don'ts This disorder is so rare that there's only five doctors four in Seattle and one in Boston.
We Travel to Boston Children's Hospital every six months to see their team over there from hematology, Pulmonary, cardiology, endocrinology, genetics, and gastroenterologist. We also have to travel to Children's Hospital Philadelphia for his thoracic insufficiency and hybpoplaysia they must track the growth of his chest every six months to make sure it's growing with himself as this can become life threatening if not intervene on time with a chest expansion.
This journey has been so hard for me. It's a taken a toll on me emotionally and financially but I can say it's made me a stronger person. He is a true fighter and that has brought more patience and the willingness to persevere to save his life as well as others. Some of the funds will be used for Sebastian's direct medical needs not covered by insurance and the rest will go directly to the Shwachman-Diamond.org to continue the research.
The point to this is to raise awareness we have lost 8 patients this year alone 2 kids in the last couple of weeks and that is a high number for the small amount of patients. We need bone marrow donors. Some people may say "oh it's painful"but it's nothing compared to the pain of losing a loved one. You have the power to save someone's life.
Please repost our campaign and help us with this journey. Thank you to everyone that has donated and who has took the time to repost
My journey began September 12,2014. He was born a full-term baby via C-section and weighed 7lbs 13oz and 19in.
When Sebastian was born he had to be resuscitated. Doctors say he was floppy and gray and not breathing anymore. They also notice his chest was abnormal. It was short and narrow. He was immediately intubated and placed on oxygen and transferred via air to a hospital nearby with a Neonatal intensive care unit (NICU).
Immediately arriving there genetics were called in for evaluation. X-rays revealed he had bell shaped lungs and his chest wall was narrow. Aside from this he also had failure to thrive so a NG-tube was placed for feeding. Seeing my son on oxygen,a nose feeding tube and cables everywhere was devastating.
By far this has been the worst moment I have ever lived. I knew something was wrong because everyone rushed in the room i felt so helpless I couldn't move. I just kept asking "why isn't my son crying?"And no one answer. Then my brother said he's ok but blocking my view. I could see in his face how frightened he was. He was changing colors. I knew something bad was happening. Not being able to see my baby, hold him and give him a kiss was really hard. All I had was a picture of him that my beautiful nurse took so i could calm down. I couldn't move Let alone not being able to be by his side due to my C-section.
I remember like it was yesterday I couldn't even hold a conversation without breaking into tears not knowing whether my son was going to survive. I felt my heart was dying the pain is unexplainable.
Once discharged I immediately ran to his side where I sat on a hard chair for hours and hours until visiting hours were over. I would come home in tears and probably called the nurses every 5 minutes. We were released 5 weeks later.
Doctors had no idea what was going on. He was tested for CF and Jeune Syndrome both negative we hit a dead end. Once home I started noticing new things like he would arch a lot. He would have a bowel movement right after his feeding and it had a very strong smell that I didn't think was normal. His pediatrician referred us to a Gastroenterologist by then he must of been like 9-10 weeks.
Our Gastroenterologist determined the arching was because he had acid reflux. He placed him on several medications to control it and said it was a big factor why he wasn't taking formula by mouth. He also noticed he had no neck control nor could do tummy time. He was very concerned.
Referrals were put out for physical therapy and occupational therapy. By this time I was seeing so many different doctors.
As days went by many test that were ordered during our NICU stay were coming in. One in specific was Pulmonary's test his report indicated he had Thoracic insufficiency and hypoplasia which these diagnosis could become life threatening as well. More test were ordered and determined his blood counts were low. He was severely anemic and needed an emergency blood transfusion. GI and genetics thought of a rare syndrome called Schwachman diamond syndrome but it would be weeks before results were in.
By December he was weighing in 7lb 01 oz his weight was deteriorating he was 3 months already. He had to get admitted for another transfusion and failure to thrive to decided whether or not a G-tube had to be placed. Once hematology got involved they recommended a bone marrow biopsy to confirm blood results for SDS. He was inpatient for 48 days and a total of 189 to this date. Results came in confirming their diagnose SHWACHMAN DIAMOND SYNDROME and g-tube placed. Although his feeding were by g-tube his stomach could only tolerated a very small amount so feeding had to be spread around the clock every 3 hours to get sufficient calories and it's still this way till this dated. Sometimes I run on no sleep for days but God is good he gives me strength to keep going.
Soon after his diagnosed his hair and facial hair started falling off it was so scary all I knew from this disorder was that it can lead to leukemia and that Kids can have physical and mental delays along with a weak immune system. My son has almost all the medical conditions that come with this disorder. He was physically delayed. Failure to thrive, Anemic, neutropenia, thoracic insufficiency, hypoplasia, pancreatic insufficiency, and the list goes on.
Thanks to Ms.Karsti at Tichenor Orthopedic my son is caught up. When we started in February of 2015. He had no head control until 7 months. Slowly with her love and care he improved so much and began meeting his mile stones. It was a lot of dedication and time. I would drive out to Long Beach four days a week for 30 minutes of physical therapy and 1 of occupational therapy.
It was hard actually not knowing if I was doing everything i could for him thats when my cousin reached out to Schwachman diamond foundation and they have been so helpful there support team is phenomenal. I have learned so much on how to care for my son. The do's and don'ts This disorder is so rare that there's only five doctors four in Seattle and one in Boston.
We Travel to Boston Children's Hospital every six months to see their team over there from hematology, Pulmonary, cardiology, endocrinology, genetics, and gastroenterologist. We also have to travel to Children's Hospital Philadelphia for his thoracic insufficiency and hybpoplaysia they must track the growth of his chest every six months to make sure it's growing with himself as this can become life threatening if not intervene on time with a chest expansion.
This journey has been so hard for me. It's a taken a toll on me emotionally and financially but I can say it's made me a stronger person. He is a true fighter and that has brought more patience and the willingness to persevere to save his life as well as others. Some of the funds will be used for Sebastian's direct medical needs not covered by insurance and the rest will go directly to the Shwachman-Diamond.org to continue the research.
The point to this is to raise awareness we have lost 8 patients this year alone 2 kids in the last couple of weeks and that is a high number for the small amount of patients. We need bone marrow donors. Some people may say "oh it's painful"but it's nothing compared to the pain of losing a loved one. You have the power to save someone's life.
Please repost our campaign and help us with this journey. Thank you to everyone that has donated and who has took the time to repost
Organizer and beneficiary
David Cavazos
Organizer
Inglewood, CA
David Velasquez
Beneficiary