At just 5 months old, Emmett was diagnosed with Spinal Muscular Atrophy, Type 1. It is the most severe SMA type with life expectancy of approximately two years . We welcome you to join him on his journey ...

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I know. You're looking at the title, Blessings, and saying that there is no way. I guess logically there is no way there should be blessing through this, but if we look at it illogically there are. Lots of them. So break out of your rut, and look at this illogically. We are. We have too!

Dr. Selby is the leading SMA neurologist on the west coast, if not in Canada. What a blessing to have someone who knows almost everything there is to know about this genetic disease. The medical team - more on them in a later blog - is extensive and wonderfully caring.

There have been gifts of gas cards/money to help cover the multiple trips to BC Children's Hosptial. That is absolutely a wonderful to a young family on a tight budget. There have been friends who've supported those of us in the East to make it out west with access to great discounts on flights. A trip to the CNE and in October a visit to the BC Lions - with fieldside access! Memories that will last a lifetime. I contacted Jolly Jumper for support because, while Emmett really enjoys his Jolly Jumper, it take two people to keep him going. One to support him and one to bounce him. They didn't have anything to support him, but suggested a couple of their products that might help me in my designs. They did. Stay tuned. Hopefully we have video to show you soon.


This blog has the full support of OSM Networks. I have another website with them and, while I was working on a draft of the blog, I had a few questions that I didn't have answers for. Not only did OSM Networks have the answers, they assigned their staff to set it up properly and are hosting it. All at their expense. We really appreciate that. That literally brought a flood of tears.

Support from friends and emails from around the country have been coming to them. Offering support and asking how help could be provided. We hope that through this blog you will be able to stay in touch with Emmett, Alisha, and Joshua. Hopefully over time it will provide you with a means of supporting them. Practical things have been so touching. The loan of a travel trailer to handle guests who've come from out of town. Likewise, a bed was provided to give extra space. The main thing - your prayers, kind wishes, and warm thoughts. People of all faiths are praying around the world. People who don't usually pray are praying. Whatever your beliefs, we appreciate you thinking about Emmett! 

As we've mentioned, Josh is a youth pastor at Level Ground Mennonite Church in Abbotsford. They are providing the flexibility with work that this young family so desperately needs. They have also activated a Meal Train to prepare meals as needed! What an amazingly practical and thoughtful way of supporting Emmett. There's no question that at times they are simply too exhausted to think about preparing meals. This is, without question, a blessing. is a fabulous network to provide support for families who have received this diagnosis. Again, very practical things. From toys that work to help keep Emmett stimulated to ideas and suggestions for the parents.



Family. What more can we say. The support and care from family. Emmett has had wonderful visits throughout the summer with his grandparents and his Aunts and Uncle. He's even seen extended family. Those times are a blessing.


Most important, Emmett is an incredible blessing. He is an unbelievably happy little boy. Your spirits are lifted beyond grief when you have a chance to interact with him.



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Blissful Ignorance

I remember thinking, when Alisha and Josh were engaged, how diverse and great their gene pool would be. Pretty bizarre thought for a man whose kid wasn't even thinking of having a child at that point. But I thought it. After all, Alisha was from Ontario and she is a third generation in Ontario. Josh and his family are third or fourth generation living in British Columbia. That was a struggle - not because we didn't love Josh - but because it was so far away. Pam and I often joked that either we raised amazingly strong, independent young women (we have two girls) or they couldn't stand us - because at the time we had Alisha in B.C. and Katie in Australia. One as far away from us as possible yet still within Canada and the other on what seemed like the other side of the world. Probably because Australia is on the other side of the world. Long distance plans, social media, Skype/FaceTime all help shrink the distance. Why, when I was young none of this was possible - it was a mailed letter and maybe an infrequent and quite expensive long distance call. Plus we walked 5 miles to school, in the snow, uphill both ways!


Thank God for technology. Alisha and Josh called us from the BC Childrens Hospital when they got the diagnosis of SMA 1. Within moments of them hearing it, we heard it and shared their grief. Thank God that Josh's family is in BC and his mom was with them at the appointment. And Katie, Alisha's sister, was visiting with them and so she was there too. They had family there at this most challenging time of their life. Josh's dad was there when they returned to Abbotsford from Vancouver. Alisha's mom flew out the next day. My flight had to be cancelled - on Wednesday I was in to see my doctor and Shingles was diagnosed. My presence could compromise Emmett's health by causing Chicken Pox - so I've been on prescription drugs and impatiently waiting for the contagious period to pass. I will be there soon. Remember in the first post how I requested that you give them plenty of space if you're not feeling well? Our family is practicing that also! Emmett comes first, not our need to be with him. I do love the way Emmett expresses himself - like this pic where he describes his feelings about SMA!

With this diagnosis of SMA 1 our entire family has suddenly become knowledgeable about this genetic disorder. There is no known history of this disease on either side of our families. As far back or as wide a spread as we know about. Silent carriers! No warning signs. We will be having genetic testing to be able to make our respective families know if there is a possibility that they are carriers. Dr. Google has provided much information - yet I caution you as I cautioned my family that you may not want to research it without a box of tissues close by. As we have done so, I think all of us question why this disease is so unknown! In the United States there has been talk that all couples getting married should be screened for the gene that leads to SMA 1. It is far more common than we think. Is it because the most severe cases, SMA 1 and SMA 2, affect only children and they may be gone before their parents have a chance to tell the world about their journey? Emmett's dad, Josh, wants to make sure that everyone knows. It doesn't matter if the carriers are lovers from opposite sides of the country or have lived in the same village all of their lives. If two carriers come together then they have a 1 in 4 chance of their offspring having this disease. These odds are horrifying. And yes, what you're wondering is absolutely right. That couple should not have more children because they odds are simply too great. Brutal honesty. Alisha and Josh heard this news the same afternoon that they heard Emmett has SMA 1.

It's ironic that August is SMA Awareness month. Wow! Have we ever become aware of SMA. And now as our families grasp with this genetic disease, we must pull even closer together to support Emmett, Alisha, and Joshua. Then when we have time, we are going to make people aware of SMA. Spinal Muscular Atrophy. If you skipped over the first post, Emmett's Story, my layman's definition of SMA is found in the last paragraph coupled with links to more professional descriptions.

Blissful ignorance. That was us the first five months of Emmett's life when we did not know what his body was doing to itself. Our hopes and dreams for Emmett continue - even though we know the brutally honest truth about SMA. Blissful ignorance - it is time that our communities are more aware of this disease that primarily strikes children. Little ones without a voice to share the news. A cure must be found!

Families of Spinal Muscular Atrophy Canada Society is an organization committed to finding a cure. Please, consider supporting them in their initiatives and research.

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There's Always Hope ...

The purpose of this blog is multi-fold. One is to keep family and friends updated on Emmett. The second is to raise awareness of this serious disease. And it's also a journal to record history of events that are happening so fast that we may otherwise lose them. We invite you to follow along with us as we laugh and cry. After essentially 5 months of blissful ignorance, there have been three trips to BC Children's Hospital and the supports that are available in the surrounding area. Family from both sides has been there to support them, attend appointments together, and enjoy Emmett.

On August 25th there was a full day in Vancouver. Visits and appointments included a Dietician, Occupational Therapist, Respite Care Home Doctor, Neurologist, and Respirologist. The Respite Home, Canuck Place, is a well-appointed facility that is staffed with a full slate of medical supports and it is designed to provide short term relief for parents who are exhausted and, when necessary, long term care. This facility is for children up to 18. The team surrounding Emmett has become very large - Doctors, Nurses, Therapists, Social Workers, and Parent Support Groups. They are incredibly caring and also very blunt and honest. There is no mistaking the diagnosis.

There is a 2% chance that SMA 1 has just appeared out of no where; 98% chance that the parents are both carriers. Alisha and Josh will soon undergo genetic testing. After that has been completed, if they are in the 98% realm then the 4 grandparents will all be tested. After a long day in the hospital, back home to eat and debrief. Fortunately, home is only an hour away from the hospital.

Dr. Kathryn Selby is Emmett's neurologist. Her area of interest is neuromuscular disorders. She is very hopeful that the research will lead to a cure for SMA in the next five years. She is involved in a study that has shown positive improvements in the quality of life of her tiny patients who place their trust in the adults around them. Alisha and Josh, with support and guidance from their medical team and their families, have some very tough choices to make. The trial is not a cure - yet. But there is hope. While searching online, Alisha found the story of a little girl who knocked all odds out of her way and, at 7 years of age, is an example of the need for hope!

The Pacific National Exhibition is on and Emmett went to explore the sites and sounds on the 26th. Time to create some family memories. While they have been advised to avoid crowded places, they were also advised that they cannot live their life in a bubble and that they must carry on and experience memories. As you can see in the candid shot, Emmett was thrilled to be at the exhibition. Alisha was also introducing a bottle to Emmett. Since feeding is one of the challenges that babies with SMA 1 have, there was concern that breast feeding may be limited in the future and alternate methods considered. Some more physically invasive like a surgically implanted gastric tube. Also, some of the testing required the skill of sucking a bottle - which Emmett has not experienced. This caused some frustration for Emmett, for while he loves his soother, he did not appreciate the bottle.

Back in Vancouver on the 27th for the sucking and feeding test, part 1, Emmett passed with flying colours. While the near future holds another test, there was a celebration that Emmett's immense sucking power (I am sure we could pick him up by his soother and carry him around!) and capable swallowing meant that he was not at immediate risk of aspirating food. This is huge with an illness that has a serious impact upon breathing and swallowing.

Meanwhile, Emmett's house is bouncing with family and friends. A couple of Grandma's eagerly waiting to hold him. An Aunt from one side and an Uncle from the other. Many of Josh's family are in B.C., so he's had the opportunity to see many great Aunts and Uncles. Even his Great-Grandparents. A great Aunt/great Aunt and Uncle from Ontario have been out to visit. Personally, I think this look is a cry out for his grandpa in Ontario to come and see him!

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