Lennon’s Story

Site created on October 6, 2022

On Tuesday, September 27th, Lennon was born during a smooth quick delivery. Everything went well, there were no signs that she had anything wrong with her.  Forever our perfect little girl.  We returned home and introduced her to her very excited big sister and brother. The first few days of her life we spent at home enjoying every newborn snuggle, and adapting to a family of FIVE! 

When Lennon was one week old, we received a call from our pediatrician at 6:00pm...The initial sign that something was off. She called a few times before leaving a message saying that she would call back at 8:00pm since she was in clinic late that evening, and that she wanted to discuss some test results that came back on Lennon's newborn screening. Being impatient and feeling the nudge that something was wrong, we checked out her patient portal to look at her test results.  We saw that Lennon was missing an ever important SMN1 genetic code.  When a baby is born missing this SMN1 gene it means that they have a rare (1 in 8,000 babies) disease called SMA, Spinal Muscular Atrophy.  SMA is a neurological muscular degenerative disease that can be devastating to a newborn baby's muscular development.  

Upon looking at Lennon's test results, we had no idea what this meant, so we did what any parents of a newborn baby would do, turn to Google.  What we were seeing online was absolutely devastating for any parent to read.  Most commonly, babies born with this rare disease begin to show signs of muscle degeneration as early as birth.  Symptoms of SMA can include an inability for a baby to lift their head, or properly move arms and legs.  Depending on what type of SMA a baby is born with, the progression of muscle degeneration can move very quickly.  We read that in the most common circumstance, babies with SMA are unable to live past the age of 2.  

To put it lightly, that evening was one of the most devastating night's of our lives.  We looked at the clock, and it read 6:35 pm.  Knowing that our physician was unable to chat with us until 8 pm, we put our phones and laptops away.  We couldn't emotionally handle any more information about SMA without being able to talk to an expert.  We turned to prayer, worship, and tried to do anything and everything that we could to take our minds off of the fact that our sweet little Lennon may be in need of a miracle in order to have a normal life moving forward.  

The clock read 7:56 pm and finally our physician was calling us back.  She informed us that Lennon most likely has SMA, these types of newborn  screenings really never get it wrong.  She informed us that there is a Medical Doctor at Gillete Children's Hospital in Saint Paul that knows the SMA disease inside, outside, and backwards.  She mentioned that we shouldn't google the disease before having the opportunity to meet with him, but unfortunately it was too late for that.  She mentioned that despite the effects that this disease has had on newborn babies in the past, there was reason to have hope.  Within the last four years the medical industry has been able to find a breakthrough in treatment options for SMA.  She said that there are treatment plans available for Lennon, treatment plans that have yielded very positive results, but that we needed to act fast and begin this journey of battling SMA as soon as possible.  This was music to our ears.  We were to meet with specialists, draw labs and begin the scary journey the very next day. 

Newest Update

ONE YEAR

Journal entry by Ellie Knigge —

Wow. Today marks the ONE YEAR ANNIVERSARY of Lennon's life-saving treatment, Zolgensma. To commemorate Lennon's 1st birthday, and this enormous milestone, we celebrated   with a lemon themed party, surrounded by numerous friends and family. Our strong girl is doing better than we could have imagined!! Her latest physical milestones have included pulling herself to stand and beginning to walk alongside furniture.  Pre-treatment, Lennon would have never been able to sit up because the degeneration with SMA type 1 is so aggressive. We are reminded everyday, through Lennon, that our God is a miracle worker! 

Speaking of miraculous, we went back to Gillete for Lennons bi-annual evaluations, and we were informed that Lennon is the only patient at Gillete who has been diagnosed by newborn screen, and has thus far been asymptomatic... We couldn't believe it! It is a humbling place to be. With the treatment for SMA only being 5 years old, and the previous prognosis being palliative care and a 2-year max life expectancy, we still can't wrap our heads around it all. 

Lennon will continue to be monitored by her neuromuscular team at Gillete as she develops and likely for the rest of her life, especially since the oldest person living to have received Zolgensma isn't any older than 7-years-old. We hope and pray that Lennon continues to grow into the strong and resilient girl we already see her becoming, and that we never take her life for granted. At the CureSMA conference that we attended back in June, we were able to meet numerous children and adults with varying degrees of SMA. We met so many wonderful people, and someone at the conference put it perfectly... The SMA community is the best community we never wanted to be apart of.

 

1 year ago I made this video of Lennons treatment:

https://www.instagram.com/reel/CjmJXkYjXGC/?utm_source=ig_web_copy_link&igshid=MzRlODBiNWFlZA==

Read More of the journal titled "ONE YEAR"
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