Being a special needs sibling isn’t easy. But these kids were born natural leaders, empaths, and helpers to help their siblings. They naturally jump in and help. Yes, they are just like other kids and get frustrated with their sibling, but it doesn’t mean they don’t love them. It’s good for adults and siblings to take a break from their special needs child/sibling.

Logan has a rare genetic disorder called CDG; Congenital Disorder of Glycosylation.

Congenital disorders of glycosylation (CDGs) are a group of rare genetic disorders that affect the way cells in the body attach sugar building blocks, called glycans, to proteins. CDGs are also known as carbohydrate-deficient glycoprotein syndromes or inborn errors of metabolism (IEMs). 

CDGs can cause a wide range of health problems because they impact how cells function. Symptoms can include:

• Developmental delay
• Failure to thrive
• Hypotonia
• Neurologic abnormalities
• Hepatopathy
• Coagulopathy
• Eye, skin, and cardiac disease
• Facial dysmorphisms 

There are more than 150 known CDG subtypes, with phosphomannomutase-2 deficiency (PMM2-CDG) being the most common. PMM2-CDG can be fatal for 20% of patients in their first four years of life, but those who survive into childhood can have a good life expectancy. There is no cure for PMM2-CDG, but treatments can help manage symptoms and prevent complications. 

Because CDGs are complex conditions, specialists often work with multiple specialties and laboratories to coordinate care. This can include collecting information before a visit, scheduling laboratory tests, consults, and imaging studies, and developing a customized care plan. 

My sister in law Juli put together a couple of videos to explain CDG in a easy way. Here are a couple of videos to share. ABC to CDG, Logan CDG , Jack Logan CDG , Super Hero .

Logan’s siblings; Luke, Keira and Kayla have always supported and helped Logan be apart of any situations. Luke (8) always wants to help push and even tries to carry him to get to where he needs to go. Keira (16) has had Logan be apart of Saturday chores as much as possible. Kayla (18) supports Logan and even got a tattoo about him. Kayla, Keira and Luke help bathe Logan, change his butt, feed him, lift him in and out of his chair and the car, get him dressed, put him to bed, bring him places to show off to friends and people at work, assist him during church and so much more.

I do want to forget to recognize us parents and all that we do, but our kids, these siblings, are beyond a gift to us to help us with the extra tasks that it takes to have a special needs child/sibling. All of our kids are super heroes. It takes a lot physical, mental, social, spiritual strength to endure this on a daily basis.

We get endless tight hugs, sweet kisses, see endless specialists at the hospital and doctor offices, go through countless diapers and wipes, always have a water sippy on hand, we have so many medical supplies to help Logan to survive and be as “normal” as possible, and yet when we take family vacations, we modify them to the best of our ability to make sure everyone, and I mean EVERYONE can be apart and have fun during the adventures.

This is our family now. We have had an exchange student name Louise living with us until July 2024. She is from France and is a ray of sunshine. Logan calls her Lee-Lee. So you have me (Britney), Aaron, Kayla (Logan calls her La-La), Keira (Logan calls her Ra-Ra), Luke ( Logan calls him Luuuuke), and sweet Logan.

We have been truly blessed and I hope you enjoyed reading a little about Logan and just a sliver of what his siblings do for him. May we recognize and remember the sacrifice and blessings the siblings do for their sweet special needs sibling. Life is precious and worth sharing. You can follow me and our life’s journey on Instagram

Hugs to you my friend-