The Costello's
Welcome to our family's page!
We are the Costello's: Mark, Brandy, Landon, Cullen, & Carter! We like to think of ourselves as much like a normal family as any other! We have been given many bumps in our pathway of life, but each and every one of them have made us stronger and taught us a lesson well worth learning!
Landon Patrick is the oldest of our three boys. He will be 7 years old November 22, 2012! Landon was born with CCHS. Also known as "Haddad's Syndrome", or "Ondine's Curse", or "Congenital Central Hypoventilation Syndrome.' He also has Epilepsy & Hirshsprung's Disease. Basically his brain does not tell him to breathe, nor control any of the bodys main functions like regulating body temperature, blood circulation, blood pressure, vision, hearing and BREATHING! Epilepsy causes him to have seizures of many kinds and to many extremes. He mostly seizes in his sleep. We regulate his Epilepsy with daily medication and keep emergency medication on hand in case a seizure occurs so that we may aid in stopping it before damage occurs to his body. Hirshprungs Disease in Landon was fully colonic, meaning his entire colon was affected. He did not have the necessary cells to make his colon function properly therefore in his early years his bowels were controlled by many reconstructive surgeries and a colostomy and ileostomy being placed on his belly. To date he has had many more surgeries to remove the "dead" colon and reconnect his bowels in a different way that allows him to potty normally. Though part of CCHS is urine incontinence, and despite his surgeries to the bowel he is doing fantastic with potty training! Landon was never able to breathe on his own after birth and required immediate intubation. He spent the first 6 months of life in a NICU where he underwent 7 major surgeries (14 to date) including a tracheostomy, feeding tube, etc. Landon is still 24 hour ventilator dependent via his trach. Though he was never supposed to survive infancy, hes here and amazes us everyday! He learned to eat by mouth and his GTube was removed around age 3. Another huge accomplishment for him! He walks, talks, and attends school with his homehealth nurse, Mrs Ericka! Whom loves going back to elementary school! Landons pretty stable on a normal basis but at any given second he plummets to critical status, therefore we NEVER leave him in a room alone nor let our guard down! We stay fully prepared for an emergency of any kind!
Cullen Jacob is our middle son and is healthy as could be! He was born a big 10 Lb healthy baby that was returned to his mommy and daddy for lots of love and bonding time! Something that was taken from us when Landon was a baby due to the severity of his illness. Cullen showed me what it was like to change a diaper, feed my baby from a bottle, suck a pacifier, hold, snuggle, cuddle, bathe and dress my baby! Things as a mother I longed for. He kept us busy as he learned to sit, crawl, and walk! Now his 2nd birthday is approaching on August 6, 2012 and he is just that of a typical toddler boy...INTO EVERYTHING! Hes handsome as can be with crystal blue eyes and blonde hair, chunky cheeks and thighs! He loves to be outside, helping daddy work, loves daddys tools, helping Grammie take out the trash, and he too loves to help his brothers. Hes smart as a whip, and watches every move big brother Landon makes. He knows how to silence a ventilator for Landon and help handbag oxygen to baby brother Carter...HE MISSES NOTHING! I pray that with him growing up with TWO brothers with such extreme medical needs that he has a huge appreciation for special needs and LIFE in general!
Carter Wyatt is our baby boy! He will celebrate his 1st Birthday on July 27, 2012!!!! Also a huge accomplishment given his diagnosis, prognosis, and the many life threatening events thats occur. Carter has Type 1, SMA, "Spinal Muscular Atrophy." SMA is the #1 genetic killer of infants and toddlers. Most people never know that 1 in every 40 people on earth ARE SILENT CARRIERS for this devastating disease! Carter is missing the SMN1 gene that produces a protein our bodies need. That protein feeds motor neurons in the spinal cord that in turn keep every muscle in the body functioning. Without the protein, the motor neurons die, and cause the muscles to "waste away." The lifespan of a type 1 SMA patient is typically less than age 2. Carter has already lost the ability to eat & swallow and had to have a feeding tube placed into his belly on Thanksgiving 2011, shortly after his diagnosis at 3 months old. He began showing signs of the disease at 2 months when he stopped moving his legs suddenly and his head quickly became floppy. The genetic blood test to confirm diagnosis usually takes around 3 weeks to confirm, making an agonizing 3 weeks for parents! Carter soon started struggling to breathe around Christmas 2011 and was placed on bipap when asleep. Only a month later on mommys birthday, January 23, 2012, Carter began to severly struggle to breathe at home and was rushed to the hospital where it was confirmed he had Rhino Virus and two collapsed lungs! He was immediately intubated and spent the next 40 days recovering in the PICU. Carter since, has returned to several emergency rooms only to be intubated and admitted to the ICU for extended stays where he usually is recovering from collapsing lungs. He will undergo a tracheostomy surgery soon beginning of July 2012. He has aquired alot of medical equipment and routine daily care so mommy and daddy have brought Grammie & nurses in to help. When emergencies happen in our home, they usually come in groups, and there are never enough experienced hands on board to help! We are still learning alot about SMA as we move along in this journey, and much thanks is given to the parents of other SMA children! They have a fantastic support group where we stay fully involved and learn something new everyday, which we hope to be able to share with the public to advance knowledge of this horrific disease and to aid newly diagnosed families in ways others helped our family at our time of need! There is much thanks to be given to the families who never stop raising funds and pushing research to continue on in a faster than average manner! Our goal for this foundation is to be a large part in that effort to cure our babies! Time is precious in the SMA world. No one can promise you tomorrow. But many of our warriors are reaching previously unheard of ages, some even in their teens, and few in their early twenties. Help us help our Carter, Landon and all of their little SMA & CCHS friends who deserve a chance at a fullfilling life!
THANK YOU for taking the time to allow us to introduce you to OUR FAMILY! We hope you continue to follow us in our journeys and we hope you learn so much along the way!!
With Love,
The Costello Family
We are the Costello's: Mark, Brandy, Landon, Cullen, & Carter! We like to think of ourselves as much like a normal family as any other! We have been given many bumps in our pathway of life, but each and every one of them have made us stronger and taught us a lesson well worth learning!
Landon Patrick is the oldest of our three boys. He will be 7 years old November 22, 2012! Landon was born with CCHS. Also known as "Haddad's Syndrome", or "Ondine's Curse", or "Congenital Central Hypoventilation Syndrome.' He also has Epilepsy & Hirshsprung's Disease. Basically his brain does not tell him to breathe, nor control any of the bodys main functions like regulating body temperature, blood circulation, blood pressure, vision, hearing and BREATHING! Epilepsy causes him to have seizures of many kinds and to many extremes. He mostly seizes in his sleep. We regulate his Epilepsy with daily medication and keep emergency medication on hand in case a seizure occurs so that we may aid in stopping it before damage occurs to his body. Hirshprungs Disease in Landon was fully colonic, meaning his entire colon was affected. He did not have the necessary cells to make his colon function properly therefore in his early years his bowels were controlled by many reconstructive surgeries and a colostomy and ileostomy being placed on his belly. To date he has had many more surgeries to remove the "dead" colon and reconnect his bowels in a different way that allows him to potty normally. Though part of CCHS is urine incontinence, and despite his surgeries to the bowel he is doing fantastic with potty training! Landon was never able to breathe on his own after birth and required immediate intubation. He spent the first 6 months of life in a NICU where he underwent 7 major surgeries (14 to date) including a tracheostomy, feeding tube, etc. Landon is still 24 hour ventilator dependent via his trach. Though he was never supposed to survive infancy, hes here and amazes us everyday! He learned to eat by mouth and his GTube was removed around age 3. Another huge accomplishment for him! He walks, talks, and attends school with his homehealth nurse, Mrs Ericka! Whom loves going back to elementary school! Landons pretty stable on a normal basis but at any given second he plummets to critical status, therefore we NEVER leave him in a room alone nor let our guard down! We stay fully prepared for an emergency of any kind!
Cullen Jacob is our middle son and is healthy as could be! He was born a big 10 Lb healthy baby that was returned to his mommy and daddy for lots of love and bonding time! Something that was taken from us when Landon was a baby due to the severity of his illness. Cullen showed me what it was like to change a diaper, feed my baby from a bottle, suck a pacifier, hold, snuggle, cuddle, bathe and dress my baby! Things as a mother I longed for. He kept us busy as he learned to sit, crawl, and walk! Now his 2nd birthday is approaching on August 6, 2012 and he is just that of a typical toddler boy...INTO EVERYTHING! Hes handsome as can be with crystal blue eyes and blonde hair, chunky cheeks and thighs! He loves to be outside, helping daddy work, loves daddys tools, helping Grammie take out the trash, and he too loves to help his brothers. Hes smart as a whip, and watches every move big brother Landon makes. He knows how to silence a ventilator for Landon and help handbag oxygen to baby brother Carter...HE MISSES NOTHING! I pray that with him growing up with TWO brothers with such extreme medical needs that he has a huge appreciation for special needs and LIFE in general!
Carter Wyatt is our baby boy! He will celebrate his 1st Birthday on July 27, 2012!!!! Also a huge accomplishment given his diagnosis, prognosis, and the many life threatening events thats occur. Carter has Type 1, SMA, "Spinal Muscular Atrophy." SMA is the #1 genetic killer of infants and toddlers. Most people never know that 1 in every 40 people on earth ARE SILENT CARRIERS for this devastating disease! Carter is missing the SMN1 gene that produces a protein our bodies need. That protein feeds motor neurons in the spinal cord that in turn keep every muscle in the body functioning. Without the protein, the motor neurons die, and cause the muscles to "waste away." The lifespan of a type 1 SMA patient is typically less than age 2. Carter has already lost the ability to eat & swallow and had to have a feeding tube placed into his belly on Thanksgiving 2011, shortly after his diagnosis at 3 months old. He began showing signs of the disease at 2 months when he stopped moving his legs suddenly and his head quickly became floppy. The genetic blood test to confirm diagnosis usually takes around 3 weeks to confirm, making an agonizing 3 weeks for parents! Carter soon started struggling to breathe around Christmas 2011 and was placed on bipap when asleep. Only a month later on mommys birthday, January 23, 2012, Carter began to severly struggle to breathe at home and was rushed to the hospital where it was confirmed he had Rhino Virus and two collapsed lungs! He was immediately intubated and spent the next 40 days recovering in the PICU. Carter since, has returned to several emergency rooms only to be intubated and admitted to the ICU for extended stays where he usually is recovering from collapsing lungs. He will undergo a tracheostomy surgery soon beginning of July 2012. He has aquired alot of medical equipment and routine daily care so mommy and daddy have brought Grammie & nurses in to help. When emergencies happen in our home, they usually come in groups, and there are never enough experienced hands on board to help! We are still learning alot about SMA as we move along in this journey, and much thanks is given to the parents of other SMA children! They have a fantastic support group where we stay fully involved and learn something new everyday, which we hope to be able to share with the public to advance knowledge of this horrific disease and to aid newly diagnosed families in ways others helped our family at our time of need! There is much thanks to be given to the families who never stop raising funds and pushing research to continue on in a faster than average manner! Our goal for this foundation is to be a large part in that effort to cure our babies! Time is precious in the SMA world. No one can promise you tomorrow. But many of our warriors are reaching previously unheard of ages, some even in their teens, and few in their early twenties. Help us help our Carter, Landon and all of their little SMA & CCHS friends who deserve a chance at a fullfilling life!
THANK YOU for taking the time to allow us to introduce you to OUR FAMILY! We hope you continue to follow us in our journeys and we hope you learn so much along the way!!
With Love,
The Costello Family