Love for the Bell family
Donation protected
Below is Marshall's story that was shared on our Caring Bridge site. We have had some generous people request a way to support our family and to help Marshall through a financial gift. Therefore, we have setup this gofundme account in response to that request. The funds will be used exclusively for Marshall's medical equipment, medical bills, or for help compensating a nanny or other help for Marshall. There is not a "goal" or a limit for the this campaign. We are just completely overwhelmed with gratitude and are just so thankful for the loving community that surrounds us. Here is Marshall's story:
Marshall was born on February 5, 2016 with the most beautiful head of thick dark hair that stuck straight up. Her first year of life was happy and uneventful in reference to health and development, aside from some mild reflux. At about 13 or 14 months (March or April 2017) we noticed a fine tremor that occurred when she would turn her head in either direction and in her hands at times. We also felt that her core strength seemed somewhat weak. We pointed these observations out the her pediatrician at her 15 month appointment. He ordered blood work, a neurology referral, MRI, and physical therapy. The blood work and MRI came back normal, and the neurologist felt that we should just continue with PT and make a follow up appointment for 6 months. We were comfortable with this plan and felt Marshall was gaining strength and making progress toward meeting milestones, albeit slow progress. She was taking several steps independently and increasing her vocabulary. In October 2017, it seemed that Marshall's tremor was becoming more exaggerated and changing to more ataxic movements. We also became aware that her developmental progress seemed to be stalling. She didn't seem to be regressing, but she wasn't making any gains either. However, by November we became concerned that she was slowly regressing. We saw her pediatrician again to get his opinion on our concerns at the beginning of December 2017. He was immediately concerned with her presentation and how much it had changed since he had last seen her. He referred us to another neurologist, one who specializes in degenerative disorders, as well as a geneticist. We were able to meet with the geneticist at the end of December and he felt that we needed to run a full genome study on Marshall. We did that blood work that day but it would take 6-8 weeks for results. At this point, Marshall could no longer pull up to a standing position and was struggling to stay balanced while sitting. Her crawling was slowing and becoming less coordinated. We were able to meet with the new neurologist at the beginning of January 2018, and he ordered a few other lab tests as we awaited the genetic testing results. Those tests came back within normal limits. A few weeks later, we noticed that Marshall was beginning to have several short seizures. We let the neurologist know of this new development, and he ordered an EEG that revealed infantile spasms. She immediately began a medication for that diagnosis. At the beginning of February 2018, our geneticist had us come in to the clinic for her genetic test results. The news was devastating. Marshall was diagnosed with a progressive myoclonic epilepsy. It is an exceedingly rare (only 40 known cases worldwide) neurodegenerative genetic disorder. Alex and I are both recessive carriers, and we immediately became concerned for our new baby, Olivia, who is due April 1. There is no treatment available and the disease is degenerative. Each case is individual but the prognosis is poor. At this time, Marshall can no longer roll over and her head control is declining. She cannot coordinate the food in her mouth to chew and swallowing is difficult for her. She is scheduled for surgery on March 6 to place a feeding tube (G button) in her stomach. Although it is a sad procedure to us for our girl who loved eating and would eat anything, it is a necessary and relieving procedure, as we are struggling to keep her hydrated and nourished at this time.
These months have proven to be the most difficult and sad months of our lives with much grief. We have cried countless tears and struggled to understand the Lord's plan in this. However, we have seen our good good Father in sweet and tender ways. Ways that we wouldn't have seen Him otherwise. We have seen Him in each of you as you have lovingly cared for us and encouraged us and fed us and cried with us. We trust Him with Marshall, and we trust Him in His plan for our family, even though we don't understand His plan. He made Marshall perfectly and He loves her more than we can imagine, and we cling to that. The verse that He laid on our hearts for her before she was born was Proverbs 31:25 "She is clothed in strength and dignity and laughs without fear of the future." We pray that over her, and we see that in her with each smile and laugh she gives us. We do not know what the future holds for Marshall or any of us, and we are learning to live moment to moment with the grace He gives us for each day.
Update, May 2018: Marshall successfully underwent her feeding tube placement on March 6th. She is home and comfortable. We are still working on figuring out her dietary needs and her tolerance to bolus feeds. Her intentional movements are all but gone except for some head movements, but she has the most beautiful smile and giggle. She lights up a room with her smile.
Olivia was born on March 30th, 2018. Four days later we took her to get blood work for the genetic test that would help us find out if she had the same genetic makeup that caused Marshall's degenerative disease. The genetic test was supposed to take two weeks to get the results back. It was another waiting period with profound stress and a heavy weight on our shoulders as parents. However, the Lord really gave us peace during that time. The results came back in 6 days and to our relief, Olivia does not have the same double recessive gene and does not have the genetic makeup that caused Marshall's degenerative disease. We are still praising the Lord for sparing Olivia. We are so grateful.
Written by Alex Bell and Lauren Bell in Cave Springs, Arkansas. We are Marshall’s parents. The funds will be used exclusively for Marshall's medical equipment, medical bills, or for help compensating a nanny or other help for Marshall.
For more information, see our Caring Bridge site:
https://www.caringbridge.org/visit/marshallbell
Marshall was born on February 5, 2016 with the most beautiful head of thick dark hair that stuck straight up. Her first year of life was happy and uneventful in reference to health and development, aside from some mild reflux. At about 13 or 14 months (March or April 2017) we noticed a fine tremor that occurred when she would turn her head in either direction and in her hands at times. We also felt that her core strength seemed somewhat weak. We pointed these observations out the her pediatrician at her 15 month appointment. He ordered blood work, a neurology referral, MRI, and physical therapy. The blood work and MRI came back normal, and the neurologist felt that we should just continue with PT and make a follow up appointment for 6 months. We were comfortable with this plan and felt Marshall was gaining strength and making progress toward meeting milestones, albeit slow progress. She was taking several steps independently and increasing her vocabulary. In October 2017, it seemed that Marshall's tremor was becoming more exaggerated and changing to more ataxic movements. We also became aware that her developmental progress seemed to be stalling. She didn't seem to be regressing, but she wasn't making any gains either. However, by November we became concerned that she was slowly regressing. We saw her pediatrician again to get his opinion on our concerns at the beginning of December 2017. He was immediately concerned with her presentation and how much it had changed since he had last seen her. He referred us to another neurologist, one who specializes in degenerative disorders, as well as a geneticist. We were able to meet with the geneticist at the end of December and he felt that we needed to run a full genome study on Marshall. We did that blood work that day but it would take 6-8 weeks for results. At this point, Marshall could no longer pull up to a standing position and was struggling to stay balanced while sitting. Her crawling was slowing and becoming less coordinated. We were able to meet with the new neurologist at the beginning of January 2018, and he ordered a few other lab tests as we awaited the genetic testing results. Those tests came back within normal limits. A few weeks later, we noticed that Marshall was beginning to have several short seizures. We let the neurologist know of this new development, and he ordered an EEG that revealed infantile spasms. She immediately began a medication for that diagnosis. At the beginning of February 2018, our geneticist had us come in to the clinic for her genetic test results. The news was devastating. Marshall was diagnosed with a progressive myoclonic epilepsy. It is an exceedingly rare (only 40 known cases worldwide) neurodegenerative genetic disorder. Alex and I are both recessive carriers, and we immediately became concerned for our new baby, Olivia, who is due April 1. There is no treatment available and the disease is degenerative. Each case is individual but the prognosis is poor. At this time, Marshall can no longer roll over and her head control is declining. She cannot coordinate the food in her mouth to chew and swallowing is difficult for her. She is scheduled for surgery on March 6 to place a feeding tube (G button) in her stomach. Although it is a sad procedure to us for our girl who loved eating and would eat anything, it is a necessary and relieving procedure, as we are struggling to keep her hydrated and nourished at this time.
These months have proven to be the most difficult and sad months of our lives with much grief. We have cried countless tears and struggled to understand the Lord's plan in this. However, we have seen our good good Father in sweet and tender ways. Ways that we wouldn't have seen Him otherwise. We have seen Him in each of you as you have lovingly cared for us and encouraged us and fed us and cried with us. We trust Him with Marshall, and we trust Him in His plan for our family, even though we don't understand His plan. He made Marshall perfectly and He loves her more than we can imagine, and we cling to that. The verse that He laid on our hearts for her before she was born was Proverbs 31:25 "She is clothed in strength and dignity and laughs without fear of the future." We pray that over her, and we see that in her with each smile and laugh she gives us. We do not know what the future holds for Marshall or any of us, and we are learning to live moment to moment with the grace He gives us for each day.
Update, May 2018: Marshall successfully underwent her feeding tube placement on March 6th. She is home and comfortable. We are still working on figuring out her dietary needs and her tolerance to bolus feeds. Her intentional movements are all but gone except for some head movements, but she has the most beautiful smile and giggle. She lights up a room with her smile.
Olivia was born on March 30th, 2018. Four days later we took her to get blood work for the genetic test that would help us find out if she had the same genetic makeup that caused Marshall's degenerative disease. The genetic test was supposed to take two weeks to get the results back. It was another waiting period with profound stress and a heavy weight on our shoulders as parents. However, the Lord really gave us peace during that time. The results came back in 6 days and to our relief, Olivia does not have the same double recessive gene and does not have the genetic makeup that caused Marshall's degenerative disease. We are still praising the Lord for sparing Olivia. We are so grateful.
Written by Alex Bell and Lauren Bell in Cave Springs, Arkansas. We are Marshall’s parents. The funds will be used exclusively for Marshall's medical equipment, medical bills, or for help compensating a nanny or other help for Marshall.
For more information, see our Caring Bridge site:
https://www.caringbridge.org/visit/marshallbell
Fundraising team: Marshall buddies (3)
Alex Bell
Organizer
Cave Springs, AR
Stefanie Lawson
Team member
Lauren Bell
Team member