Please help Landon fight Neuroblstoma
Landon, Cullen, and Carter are brothers. Cullen is the 2 year old middle brother, whom was blessed with full health. Unfortunately big brother Landon and baby brother Carter each have been diagnosed with very unforgiving diagnoses. Landon is 7 years old and has Haddad's Syndrome: Congenital Central Hypoventilation Syndrome, Hirshsprung's Disease and Epilepsy. Landon has yet to take his first involuntary breath and lives via tracheostomy on a ventilator 24 hours a day since birth. His brain does not tell him to breathe. Landon has the more rare form of CCHS that meant deleted genes rather than repeated genes. This placed Landon in the 10% of CCHS patients. Within his category, Landon is actually the only surviving child of the 8 ever known with his chromosomal deletions, the other 7 having past in infancy. Yet, after much testing, his disease was totally spontaneous. He is in uncharted territory according to his physicians, since his prognosis was that he was supposed to pass by age of 2. His parents were told he was blind, deaf, and would never walk, talk, breathe, or eat on his own. Along with his CCHS, Landon has virtually no colon due to his Hirshsprung's Disease. This causes many daily problems for Landon to grow as he dehydrates very quickly, doesn't absorb fluids, nutrients, orminerals like he should, he is also prone to neuroblastoma tumors, and seizures. On several occasions an illness of many kinds, has caused his vital organs to shut down becoming damaged and he now struggles with hypertension due to these incidents. Though Landon, has overcome his original prognosis, abrupt episodes can/do happen daily that could result in detrimental setbacks and/or death. Landon is as much of a typical 7 year old as he can be with much medical intervention and assistance. He lets nothing stop him as he continues to fight forward, having learned how to talk over his trach and ventilator, eat by mouth, and walk, run, and jump like other children. He has attended school but recently had another battle with dehydration that has since moved him to homebound schooling.
Carter is 18 months old and was diagnosed at 2.5 months with Type 1 Spinal Muscular Atrophy. SMA is a degenerative neuromuscular disease that has no current cure and/or treatment. With everyday that Carter too surpasses his prognosis, he is robbed of the ability to function in every way. Carters body is missing genes that produce a protein the body feeds to motor neurons in the spinal cord that create nerve growth and or muscle function. Carter rapidly lost the ability to move every part of his body, breathe on his own, swallow, eat, and cough. Yet, his sensation is spared and so is his mind. He's a brilliant little boy trapped in a body that cannot move in any way to express himself, except with eye movement and currently a smile that could soon fade away as well. Children with Type 1 SMA are expected to pass in fancy to age 2 years. Without full intervention, this would uphold to current statistics. Carters parents have taken extra measures to prolong his life with the understanding he's a very happy, loving, brilliant little boy! Carter enjoys every minute with his family, playing with his brothers and his puppy Axel. Though, many medical assisting devices are used in every aspect of daily living, Carter grows smarter by the day. Carter is in a wheelchair that he is learning to drive independently with the slightest of finger movement that remains. This is a huge step for Carter as it aids in his self confidence and independence. In addition to Carters SMA he has severe Osteopenia. His doctors have repeatedly mentioned he has the thinnest bones they have ever seen in a child of his age. Carter goes every 3 months for days of bone infusions in hopes to strengthen his bones. He breaks/fractures with the simplest of touch whether its holding him, moving him, or changing a diaper. His care, along with Landons requires many caregivers at once including, mom, dad, grandma, and several nurses. This has made emplyment very challenging, leaving only dad to be able to work while mom stays home with the boys. They are highly susceptible to infections and spend much time between doctors appointments, therapies, and intensive care hospital stays.These boys are stronger than many of their kind and have a will to survive like no other. Carter has outgrown his current wheelchair his family purchased out of pocket and his therapists helped get him his first powerchair. In order to accommodate all of his equipment it was very carefully built to meet his needs, resulting in about a 300-400 pound chair that does not fit in the family's current van. Mom and dad currently lift on Carters 150 pound chair in and out of the van for every appointment and outing. The interior setup they are forced to make due with is unsafe for everyone inside, and sadly because of the lack of room, some registered nurses and/or family members must be left behind.
The Costello family tries to stay active in the SMA and CCHS Communities as much as possible given their very busy lifestyles taking care of their boys' needs. Mom and dad donate their time to assist newly diagnosed families by educating them and assisting new families in their options and understanding of their new diagnoses. They have welcomed many families into their home to introduce Landon and Carter, their equipment, supplies, and setup, and also have made many trips to hospitals to aid families in the ICU. Mom (Brandy) started a website for theboys in hopes for it to be an educational center of resources for their childrens diseases and all the specifics they entail. You can visit their site at www.3BrothersForACure.com
We are trying to raise funds to help the Costello family get a handicap van and fully equip it for their family's needs.
Please help our efforts in any way possible no matter how large or small your contribution. Help us give Landon and Carter a safe, dependable, and fully functional form of transportation to receive the best medical care possible and just enjoy being kids!
Brandy and Mark Costello needed a custom van that could handle the medical equipment that keeps two of their three sons alive. A drive by the Carrollton Police Officers Association resulted in enough donations to buy the van and give the family a $41,000 check as well.
Published: 05 April 2013 11:02 PM
2-28-13: Against the odds, Plano family with ailing kids is happy
CARROLLTON "” Patrolman Mark Costello is a reluctant public speaker, even before an encouraging crowd of friends and fellow police officers.
"I don't know what to say. I really don't," he said, clearly wishing to take a headlong slider out of the spotlight.
His wife, Brandy, came to the rescue, whispering sotto voce to their 7-year-old son, Landon, "Do you want to say "˜thank you' "?
Landon popped up "” mindful not to move farther than a 5-foot tether of breathing tube that links him to a portable ventilator. He happily crowed out his thanks, to laughter and applause.
Thursday was a big day for the Costellos, whose lives most of us would find unimaginably demanding.
They were the honorees at a gathering of Mark's police colleagues, an event to which they traveled in their big new commercial van. It has been specially outfitted to meet two of their three sons' extraordinary medical needs.
Far beyond the bounds of calculable odds, Mark and Brandy have two children with devastating, incurable and entirely unrelated disabilities.
Middle son Cullen, 2, is lively, energetic and glowing with good health.
Landon was born with congenital central hypoventilation syndrome, a rare disorder in which the brain does not signal the body to breathe. He has been dependent on a ventilator since birth.
Cullen was born after the couple underwent testing to ensure that Landon's condition was not an inherited condition that might affect other children they might have.
Then came Carter, now 20 months old. He was initially healthy, but at two months, he began losing motion and muscle control. Doctors diagnosed a severe form of spinal muscular atrophy, which has gradually stolen the little boy's ability to move, swallow or verbalize.
Life expectancy for both Carter and Landon is almost impossible to predict.
When Carter's condition required that he begin using a technically sophisticated, stabilizing wheelchair that weighs more than 400 pounds, the Costellos became virtually housebound, apart from Mark's overnight patrol shift.
It was nearly impossible to fit the family, which includes Mark's mom, Evelyn, and a full-time nurse, plus the medical equipment needed to keep the two boys alive, into any passenger vehicle on the market.
They pinned their hopes on a long-shot fundraising effort to purchase a specially modified commercial van, outfitted with an industrial lift and backup electrical power.
When I first met and wrote about the family just over a month ago, their supporters had raised a remarkable $32,000 toward the $87,000 cost of the van.
In less than five weeks, they added more than $75,000 to that sum, which was being raised through a charitable website. It was more than enough to purchase and outfit the van, which was delivered this week.
And on Thursday, the Carrollton Police Officers Association gave them a check for an additional $41,000, raised from several area police associations, citizen patrol groups and individuals.
"And it's still coming in," Carrollton POA president Brian Box cheerily reported.
"Oh my gosh. My gosh," Brandy gasped softly as Box presented the check. As she spoke, she gently cradled Carter, whose expressive eyes are the only portal to the little boy's sweet, loving personality.
You forget sometimes that human beings are capable of profound, selfless grace. I forget it all the time, caught up in my own busy, selfish affairs, and working in a business that so often deals with tragedy and malfeasance.
It's an easy overstatement to talk about people "devoting their lives" to something apart from themselves. The reality is that Mark, Brandy and Evelyn devote every day to giving these three boys a happy, loving, normal childhood.
For Carter and Landon, providing an experience that approximates a "normal" childhood is an all-day, everyday sacrifice of the leisure and pleasure most of us take for granted. They don't complain.
But it's also shockingly expensive. The gifts this family has received, from both friends and strangers, have given them a little more freedom, a little breathing space.
"To be able to go places with our kids "¦" Mark said haltingly, gesturing toward the big, glossy-black van. "That was nearly impossible.
"Now we can."