Move Mountains For Rowan
Donation protected
Hi!
Thank you for visiting and reading about Rowan and Krabbe disease. Please, meet the Shaw family: parents Jacklyn and Derrick; big brother Eli, and precious Rowan.
From Rowan's Mom:
On June 10, 2019 we excitedly became a family of four when our baby boy Rowan was born. No longer an only child, big brother Eli was SO excited to have a best friend to grow up with. Rowan was a very happy, smiley typical newborn. He loved his toys, watching his big brother and big puppy play, and he LOVED to eat and sleep! With his new responsibility, Eli at three years old really became a new version of himself, and truly, we all did - this foursome wanted to take on the world.
Newborns are hard to predict on a daily basis, but at twelve weeks old, Rowan started to become unusually irritable. As a Registered Nurse and a loving mom, I was getting very nervous, and Derrick was incredibly patient and supportive in all my worry. Sleeping had been abnormally challenging and we found changes in his body movement. Within a matter of a few weeks, Row’s head control began to diminish and he started to have recurring episodes of muscle spasms and stiffness. I was becoming rather alarmed; he hadn’t even tried to roll over at this point.
After observing him and researching all I could, I started to consider Infantile Spasms (a seizure disorder). At our four-month check up in October, I told my family doctor that I wanted a referral to pediatric neurology for consultation and testing. I work with our family doctor at the local hospital, so he knows me and my approach to health care, and he agreed that neurology may be the right path to follow. Seeking diagnosis can be both exciting and terrifying, and I didn’t expect to have this delicate experience within my own household so soon. Of course, we needed specific advice and specific care, so we waited patiently for our next steps.
We met with the most amazing Dr. Egidio Spinelli, our Pediatric Neurologist, late in November. He respectfully rejected my suggestion of the seizures and he expected he could find an answer - he promised it. I remember feeling such relief that my sweet baby boy wasn’t having seizures. Looking back now, I wish so much that it was seizures - we can treat that, live with that. We were not prepared to receive the most devastating news that came six weeks later.
The month of December was an absolute blur. Daddy Derrick was working every day and getting ready for Christmas in every way, and my days at home were filled with appointments with doctors, blood collections, and ensuring my boys knew that Santa was soon to come. It felt like time was standing still while we were waiting to hear the results. We had even sent the blood work to the incredible Mayo Clinic in Rochester, Minnesota to be tested.
Making the most of the holidays was really challenging. Sweet, loving Eli was excited to share Christmas with his new brother but Rowan’s first Christmas just carried weight for us that we could never have imagined just one year before when pregnant and knowing we would have two beautiful children to love and celebrate with. It was New Year’s Eve when we got a call from Dr. Spinelli. He and a colleague in Toronto had some suggestions based on Rowan’s symptoms that led to even more testing. We went and had this blood work done immediately.
At 11:08am on Jan 3, 2020, I received a call that no parent wants to get. When I picked up the phone I could hear in the doctors voice and I instantly fell ill. He said “Hello Mrs. Shaw, it’s Dr. Spinelli. I’m calling with Rowan’s results from Tuesday”. I remember instantly going cold and empty. He told me that the results weren’t good and that he wanted me to get my family and meet him tomorrow at 1pm. We stayed on the phone for 38 mins in silence while I cried and asked minimal questions. During the call I couldn’t think of any questions to ask as I was in such a state of shock. At the time I didn’t know the diagnosis because he wanted to tell us in person - we just knew it wasn’t good.
The following day, my mother joined me and Derrick in the neurology waiting room, anxiously waiting for our meeting. Our neurologist, pediatrician and the neurology nurse came into the room with a box of tissues and sat down with us. They explained briefly that the blood work had discovered something incredibly rare and entirely unfamiliar to me.
It is Krabbe Disease, and it is a rare and fatal genetic disease. It is also known as Globoid Cell Leukodystrophy and it’s mainly divided in two by its onset into its carrier. Its “infantile” version occurs in babies less than six months of age, and the late-onset version can happen generally at any other time.
Approximately 1:250,000 or about 1-2 children per year are diagnosed in Canada. Children with Krabbe Disease have a deficiency of an important enzyme (GALC) that helps the body breakdown toxins. When these toxins build up in the brain, the myelin (the protective layer of the brain) begins to break down. The deterioration of the myelin then interrupts signals sent and received from the central and peripheral nervous systems causing irritability, nerve pain and muscle spasms. There is NO CURE for Krabbe Disease at this time. The life expectancy for infantile Krabbe is approximately 2 years old.
Rowan’s brain is unable to tell his arms and legs to move, pick up toys or at times to even swallow. He isn’t able to roll over, sit up or even feed from a bottle.
On January 21st Rowan had a nasoduodenal feeding tube inserted as he began to show signs of feeding difficulties, however we were still struggling to get the proper amounts of nutrients as he really wasn't tolerating that option well. Based on the assessment from the doctors the next step would be a more permanent feeding option.
Almost one month later on February 20th, Rowan underwent surgery to have a gastrostomy-jejunostomy tube -- commonly abbreviated as "G-J tube" -- is placed into his stomach and small intestine. This tube is used to vent Row’s stomach for air or drainage, and/or to give him an alternate way for feeding. He remained in hospital until February 27th as he had been tested positive for RSV (Respiratory Syncytial Virus) which on top of already struggling to recover from post-op, adjust to the GJ Tube, and changes in medications, he is finding difficulty to simply breath comfortably due to the symptoms from the virus - irritability, coughing, wheezing, shortness of breath. Upon being discharged from the hospital, Rowan will now need oxygen at home to support his breathing.
From the Organizer of this Page:
I’m Auntie* Justine, a best friend of this wonderful family. Jacklyn and I have been best friends for over 10 years. She and Derrick have embraced me as a direct part of their family. There are no words to describe the feeling of finding out your child is terminally ill; the pain, sadness and realization of the difficult weeks/months to come is unimaginable. Soon after learning more about Krabbe Disease, it became clear that it was going to be an extremely difficult journey and I wanted to help Jacklyn and Derrick take some of the financial stress out of their worry.
Receiving a diagnosis like this for your child is, as Jacklyn mentioned, a parent's worst nightmare. Facing everything that comes after is equally, if not more, difficult. They need our support now and will continue to in the future. Please consider donating to support Rowan’s family. Our entire family is extremely grateful for any help you can offer!
Over the next several months Rowan may need a long list of other supplies that include a home oxygen set up, a suction machine to help with a build up of secretions, a cough assist machine, special chair to support him, a Nebulizer and other ongoing medical devices/medications.
There is currently no newborn testing in Canada for Krabbe Disease, however in the United States there are 5 states that are testing routinely at birth. If a child is diagnosed before symptoms begin, a stem cell transplant is possible and significantly prolongs life (there are children living currently in their teens). Each child with this disease is affected by it differently - due to that, there is no “timeline” we can expect. We will continue to watch and work with the amazing team of doctors at the IWK Children’s Hospital to give Rowan the best quality of life.
How you can help today:
1. Donate what you can, any amount is greatly appreciated!
2. Share on all social media with hashtags #MoveMountainsForRowan
3. Email this GoFundMe link and these steps to all contacts you know
What your donation will be used for:
As Rowan’s condition progresses, he will require more and more assistance and accommodations to maintain his quality of life, and these can be extremely costly. Between home oxygen, medical supplies for his feeding tubes, and ongoing arrangements to suit Rowan’s physical limitations, it’s hard to imagine the toll it will take on a young family’s finances.
The Shaw family household income has been significantly reduced because Rowan’s mother, Jacklyn, will not return to her nursing career as expected at the end of her maternity leave. Due to the fast progression of this condition, Jacklyn will work tirelessly at home to care for baby Row and spend all the precious time she can with him, keeping track of all his medications, feedings, and medical appointments. Otherwise, she and Derrick will love and raise Rowan and Eli, and ensure an active life for their treasured Bull Mastiff Louie.
Your donations will help Rowan’s family continue to provide him with the best care and comfort for the time that remains in his precious life. We are seeking support and awareness of the disease so other children in Canada have a chance for earlier diagnosis and treatment.
Thank you from the bottom of all our hearts <3
Information on Krabbe Disease
Thank you for visiting and reading about Rowan and Krabbe disease. Please, meet the Shaw family: parents Jacklyn and Derrick; big brother Eli, and precious Rowan.
From Rowan's Mom:
On June 10, 2019 we excitedly became a family of four when our baby boy Rowan was born. No longer an only child, big brother Eli was SO excited to have a best friend to grow up with. Rowan was a very happy, smiley typical newborn. He loved his toys, watching his big brother and big puppy play, and he LOVED to eat and sleep! With his new responsibility, Eli at three years old really became a new version of himself, and truly, we all did - this foursome wanted to take on the world.
Newborns are hard to predict on a daily basis, but at twelve weeks old, Rowan started to become unusually irritable. As a Registered Nurse and a loving mom, I was getting very nervous, and Derrick was incredibly patient and supportive in all my worry. Sleeping had been abnormally challenging and we found changes in his body movement. Within a matter of a few weeks, Row’s head control began to diminish and he started to have recurring episodes of muscle spasms and stiffness. I was becoming rather alarmed; he hadn’t even tried to roll over at this point.
After observing him and researching all I could, I started to consider Infantile Spasms (a seizure disorder). At our four-month check up in October, I told my family doctor that I wanted a referral to pediatric neurology for consultation and testing. I work with our family doctor at the local hospital, so he knows me and my approach to health care, and he agreed that neurology may be the right path to follow. Seeking diagnosis can be both exciting and terrifying, and I didn’t expect to have this delicate experience within my own household so soon. Of course, we needed specific advice and specific care, so we waited patiently for our next steps.
We met with the most amazing Dr. Egidio Spinelli, our Pediatric Neurologist, late in November. He respectfully rejected my suggestion of the seizures and he expected he could find an answer - he promised it. I remember feeling such relief that my sweet baby boy wasn’t having seizures. Looking back now, I wish so much that it was seizures - we can treat that, live with that. We were not prepared to receive the most devastating news that came six weeks later.
The month of December was an absolute blur. Daddy Derrick was working every day and getting ready for Christmas in every way, and my days at home were filled with appointments with doctors, blood collections, and ensuring my boys knew that Santa was soon to come. It felt like time was standing still while we were waiting to hear the results. We had even sent the blood work to the incredible Mayo Clinic in Rochester, Minnesota to be tested.
Making the most of the holidays was really challenging. Sweet, loving Eli was excited to share Christmas with his new brother but Rowan’s first Christmas just carried weight for us that we could never have imagined just one year before when pregnant and knowing we would have two beautiful children to love and celebrate with. It was New Year’s Eve when we got a call from Dr. Spinelli. He and a colleague in Toronto had some suggestions based on Rowan’s symptoms that led to even more testing. We went and had this blood work done immediately.
At 11:08am on Jan 3, 2020, I received a call that no parent wants to get. When I picked up the phone I could hear in the doctors voice and I instantly fell ill. He said “Hello Mrs. Shaw, it’s Dr. Spinelli. I’m calling with Rowan’s results from Tuesday”. I remember instantly going cold and empty. He told me that the results weren’t good and that he wanted me to get my family and meet him tomorrow at 1pm. We stayed on the phone for 38 mins in silence while I cried and asked minimal questions. During the call I couldn’t think of any questions to ask as I was in such a state of shock. At the time I didn’t know the diagnosis because he wanted to tell us in person - we just knew it wasn’t good.
The following day, my mother joined me and Derrick in the neurology waiting room, anxiously waiting for our meeting. Our neurologist, pediatrician and the neurology nurse came into the room with a box of tissues and sat down with us. They explained briefly that the blood work had discovered something incredibly rare and entirely unfamiliar to me.
It is Krabbe Disease, and it is a rare and fatal genetic disease. It is also known as Globoid Cell Leukodystrophy and it’s mainly divided in two by its onset into its carrier. Its “infantile” version occurs in babies less than six months of age, and the late-onset version can happen generally at any other time.
Approximately 1:250,000 or about 1-2 children per year are diagnosed in Canada. Children with Krabbe Disease have a deficiency of an important enzyme (GALC) that helps the body breakdown toxins. When these toxins build up in the brain, the myelin (the protective layer of the brain) begins to break down. The deterioration of the myelin then interrupts signals sent and received from the central and peripheral nervous systems causing irritability, nerve pain and muscle spasms. There is NO CURE for Krabbe Disease at this time. The life expectancy for infantile Krabbe is approximately 2 years old.
Rowan’s brain is unable to tell his arms and legs to move, pick up toys or at times to even swallow. He isn’t able to roll over, sit up or even feed from a bottle.
On January 21st Rowan had a nasoduodenal feeding tube inserted as he began to show signs of feeding difficulties, however we were still struggling to get the proper amounts of nutrients as he really wasn't tolerating that option well. Based on the assessment from the doctors the next step would be a more permanent feeding option.
Almost one month later on February 20th, Rowan underwent surgery to have a gastrostomy-jejunostomy tube -- commonly abbreviated as "G-J tube" -- is placed into his stomach and small intestine. This tube is used to vent Row’s stomach for air or drainage, and/or to give him an alternate way for feeding. He remained in hospital until February 27th as he had been tested positive for RSV (Respiratory Syncytial Virus) which on top of already struggling to recover from post-op, adjust to the GJ Tube, and changes in medications, he is finding difficulty to simply breath comfortably due to the symptoms from the virus - irritability, coughing, wheezing, shortness of breath. Upon being discharged from the hospital, Rowan will now need oxygen at home to support his breathing.
From the Organizer of this Page:
I’m Auntie* Justine, a best friend of this wonderful family. Jacklyn and I have been best friends for over 10 years. She and Derrick have embraced me as a direct part of their family. There are no words to describe the feeling of finding out your child is terminally ill; the pain, sadness and realization of the difficult weeks/months to come is unimaginable. Soon after learning more about Krabbe Disease, it became clear that it was going to be an extremely difficult journey and I wanted to help Jacklyn and Derrick take some of the financial stress out of their worry.
Receiving a diagnosis like this for your child is, as Jacklyn mentioned, a parent's worst nightmare. Facing everything that comes after is equally, if not more, difficult. They need our support now and will continue to in the future. Please consider donating to support Rowan’s family. Our entire family is extremely grateful for any help you can offer!
Over the next several months Rowan may need a long list of other supplies that include a home oxygen set up, a suction machine to help with a build up of secretions, a cough assist machine, special chair to support him, a Nebulizer and other ongoing medical devices/medications.
There is currently no newborn testing in Canada for Krabbe Disease, however in the United States there are 5 states that are testing routinely at birth. If a child is diagnosed before symptoms begin, a stem cell transplant is possible and significantly prolongs life (there are children living currently in their teens). Each child with this disease is affected by it differently - due to that, there is no “timeline” we can expect. We will continue to watch and work with the amazing team of doctors at the IWK Children’s Hospital to give Rowan the best quality of life.
How you can help today:
1. Donate what you can, any amount is greatly appreciated!
2. Share on all social media with hashtags #MoveMountainsForRowan
3. Email this GoFundMe link and these steps to all contacts you know
What your donation will be used for:
As Rowan’s condition progresses, he will require more and more assistance and accommodations to maintain his quality of life, and these can be extremely costly. Between home oxygen, medical supplies for his feeding tubes, and ongoing arrangements to suit Rowan’s physical limitations, it’s hard to imagine the toll it will take on a young family’s finances.
The Shaw family household income has been significantly reduced because Rowan’s mother, Jacklyn, will not return to her nursing career as expected at the end of her maternity leave. Due to the fast progression of this condition, Jacklyn will work tirelessly at home to care for baby Row and spend all the precious time she can with him, keeping track of all his medications, feedings, and medical appointments. Otherwise, she and Derrick will love and raise Rowan and Eli, and ensure an active life for their treasured Bull Mastiff Louie.
Your donations will help Rowan’s family continue to provide him with the best care and comfort for the time that remains in his precious life. We are seeking support and awareness of the disease so other children in Canada have a chance for earlier diagnosis and treatment.
Thank you from the bottom of all our hearts <3
Information on Krabbe Disease
Co-organizers (4)
Justine Halliday
Organizer
Enfield, NS
Jacklyn Shaw
Beneficiary
Tanya MacLennan-Scott
Co-organizer
Derrick Shaw
Co-organizer