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Caring for Carson

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Hello, my name is Destiny, and I am starting a GoFundMe in honor of a special little boy. My best friend from college, Becca, welcomed a sweet little boy into the world on April 25, 2023. Carson made his entrance into the world early via emergency C-Section due to fetal intolerance. His heart rate kept dropping and caused enough concern for doctors to intervene. Becca was rushed back in for surgery after a scary and frantic time in triage. After a four day stay at the hospital and some testing due to some concerns, baby Carson was able to go home. Carson was however required to have a pediatrician visit his first day home. At Carson's pediatrician visit, the doctors were immediately concerned about his breathing. He was having significant chest retractions and ultimately ended up at the Children's Hospital Emergency Department. Becca spent 12 hours with Carson in the ED before eventually being admitted to the NICU for monitoring. The NICU doctors ran multiple tests but ultimately sent Carson home because his vitals had stabilized. What a relief for Becca as she so desperately wanted to be home and enjoy having a newborn. However, little did she know that Carson would endure more challenges as time went on. Carson then started having feeding issues which led to a diagnosis of a cow's milk and soy protein allergy. With this allergy came a decrease in Carson's growth which was alarming because he was only in the 1st percentile for weight. Becca was then left to navigate different formula options, a constant worry of if he was getting enough food and other unknowns. After trial and error, she finally landed on an amino acid-based formula which has been very expensive but effective so far.

At 1 month old, Carson took a trip to the Denver Aquarium. Carson loves to look at the fish and sharks. His nickname is even Ducky! After a great first trip to the aquarium filled with lots of amazing memories, Carson was rushed back to the Children's Hospital. Once at the Children's Hospital, he spent another 14 hours in the ED before being admitted. However, this time he was admitted to the Cardiac Floor and was there for four days. While there, Carson was put on 5 liters of oxygen just to keep his O2 levels in the 90's. He was given multiple breathing treatments, medications and had many more tests ran. After an eventful first month of life and many unknowns, Carson was diagnosed with Laryngomalacia, Pulmonary Valve Stenosis and Patent Ductus Arteriosus. Carson was also required to follow up with Cardiology, Pulmonology and an ENT.

At Carson's first Cardiology appointment, Becca met with an amazing group of specialists that included a cardiologist, a genetics counselor and a dietician. At this appointment, they discussed a possible diagnosis of Noonan Syndrome, had a follow-up scope done, spoke with the genetics counselor and discussed options for getting Carson's growth back on track. Becca chose to do genetic testing for Carson given that his medical issues aligned with some of the symptoms of Noonan Syndrome. After waiting what felt like forever, Becca learned that Carson had a PTPN11 gene mutation causing Noonan Syndrome. Noonan Syndrome is an autosomal dominant genetic disorder caused by mutations of more than eight genes. Carson is part of the 50% of cases where the PTPN11 gene has been mutated. Noonan syndrome has potential to disrupt almost all systems of the body. Because of this diagnosis and ongoing heart and esophageal issues, Carson will continue to be closely monitored by his team of specialists. Becca will have to decide if/when Carson will endure heart surgery because of his two heart defects he developed and surgery to hopefully resolve his esophageal issues.

Carson is now almost 5 months old and has endured more medical problems than the average adult does in their whole life. Carson is in the 11th percentile for weight, is a strong heart warrior and is SO LOVED! As of now, Becca is waiting on results for the genetic testing she had done to see if she is a carrier of the gene mutation or if it started in Carson. They will continue to go to Carson's specialist appointments every couple of weeks and are awaiting to attend a Noonan Syndrome Clinic monthly to see if Carson can benefit from any of the medical attention they can provide. They are planning Carson's surgeries within the next few months and a sleep study too.

Carson has been the light of Becca’s life since he made his entrance into the world. He loves to talk to his mommy, loves the aquarium, likes to watch Hey Bear Sensory while lounging with his favorite people and continues to keep everyone on their toes!

Becca has spent countless hours in the hospital, taken a lot of time off of work, have been traveling all over the Denver metro area for appointments and have even snuck in a trip or two to visit their family in Montana. Becca would never ask for handouts or want to feel like she were a burden to anyone. However, I can only imagine how hard it must be for her emotionally, mentally and physically to endure what they have so far but to also be able to afford any unknown expenses, especially in today's economy. There is no cure for Noonan Syndrome. Carson will continue to spend the rest of his life being guided by specialists in hopes to live as happy and healthy as possible. Becca will hopefully one day find peace in this chapter of their lives and be able to create an everlasting number of amazing memories with sweet Carson.

I know Becca would want everyone to know just how much she would appreciate a prayer, a share of their story or to help spread awareness of Noonan's Syndrome. She loves her sweet little boy more than anyone can imagine, and no parent ever wants to endure what she has or watch their child suffer in ways Carson has. Becca always tells me each chance she has just how thankful she is, how lucky she is to be Carson's mommy and she knows better days are coming.

I want to be able to help them with unexpected expenses and also help spread awareness of Noonan's Syndrome while sharing Carson's story. A prayer, a share or any donation would mean the world to Becca and Carson. They are so loved and so deserving! Carson is so strong, and I know myself and others are rooting for him each day!

#CarsonStrong "Ain't nothing but a gene thang"!


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Donations 

  • Nicole Maes
    • $50
    • 3 mos
  • Patrick Aldretti
    • $250
    • 3 mos
  • Anonymous
    • $100
    • 3 mos
  • Chester Kurtz
    • $250
    • 3 mos
  • Katrina Macleod
    • $50
    • 3 mos
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Organizer and beneficiary

Destiny Carlson
Organizer
Aurora, CO
Rebecca Martens
Beneficiary

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