Teen Battling Sanfilippo Syndrome, aka ‘Childhood Alzheimer's’
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- čas přidán 15. 11. 2023
- Sixteen-year-old Logan Pacl from Washington is living with Sanfilippo syndrome. This rare neurodegenerative disorder, caused by a gene defect, affects the brain and spinal cord. Children lose skills, suffer seizures and movement disorders and experience pain, according to the Cure Sanfilippo Foundation. The disease, also referred to as “childhood Alzheimer’s” or “childhood dementia,” is terminal. Noelle Pacl, Logan’s mother, shared his story with Inside Edition Digital’s Andrea Swindall.
The fact she goes as far as to acknowledge that her other kid's lives shouldn't revolve around their brothers' disability just goes to show how truly amazing and empathetic she is
Agreed… this is something that they try to encourage families to do. Where I’m from, we even had a siblings group for the siblings of kids with special needs where we could learn to deal with our emotions and get the chance to socialize and express ourselves and our concerns with other kids who understand. I’m an adult now so I don’t know if it still exists but I hope it does.
Is this family on social media? They’re freaky amazing. The mom is so badass.
I have a friend with special needs daughter. We discussed how she and her other children's lives have revolved around the youngest for years, and how to break that cycle.
@@sealyoness it’s never too late to try and fix it. My parents apologized when I was an adult but I never truly minded.
Logan's lucky to have such a great mother. You can tell she really cares about her son's wellbeing.
Their family is lucky to have him, too. He seems like a happy little guy.
I cried like a newborn baby 👶 😭
What a lovely mom!
@@theone-ds7izI'm crying like a baby as i speak. My son's on the spectrum & i have a soft spot when it comes to him. Although Logan's condition is different than his, it hit my soft spot just the same. 🩵✌🏽
"great mothers" don't force their children to suffer
@@lauranolastnamegiven3385how is she forcing him to suffer????
What a cruel disease, the fact that Logan has a twin must’ve made his condition so much more obvious to his poor family…😢❤
This is the most depressing thing I've seen in a long time.
a blessing and a curse.
it would help with an early diagnosis but it also must be depressing looking at the twin and knowing logan will never progress the same way :(
Yes as it was mentioned in the video🙄
@@AssistanceDogEducationalso what will the twin think as he ages? Have to be a strong family to be this open and honest ❤
Another doc I've seen recently show 2 australian families, both with 2 kids, and both kids have sanfilippo. Such a cruel disease, and I hope a cure is found soon
My beautiful niece had this disease, we lost her 2 days before her 17th birthday,. That was 31 years ago & we still miss & love her we always will.
Oh my goodness. My cousin died from this just a few years ago. He was misdiagnosed as having autism and they didn't diagnose him as having Sanfilippo Syndrome until just a week or two before he died, so we were all shocked. We had never thought he had a terminal disease so we weren't expecting him to die so young. I had assumed he was misdiagnosed because Sanfilippo Syndrome was just recently identified due to breakthroughs in genetic testing over the last decade, but hearing that your niece was diagnosed with it way before my cousin was even born, I guess that wasn't the case. That makes it even more frustrating though that they missed it in my cousin. I hope other families don't have to go through that. 😣
Sorry for your loss!
I'm sorry for both of your losses
Prayers for you both❤
Wow 31 years ago... this video must mean a lot to you in a way we cant understand. Back then I'm sure there were little to no resources. And especially no youtube or easy way to find other families going through the same thing.
I'm sorry for bothering of your losses 🙏
One of my classmates and his brother had this. After graduating high school and learning the fact that Sanfilippo syndrome is terminal. I looked him up as I know that there is a website about him and his brother, and learned he had passed away. I was really sad learning about one of my classmates passing away. RIP Ryan Victor Kapes 2004-2021
Sorry to hear that I’m sure he was a great person
I know this might sound horrible to say and I don’t mean to offend anyone,
It sounds like if a child is getting Alzheimer’s or dementia their not getting the right nutrients they need,
Obviously their body isn’t producing something to learn and act normally
I know it’s hard to say this, it’s like an older person who gets dementia or Alzheimer’s
When you get older your body probably loses some nutrients that makes the mind work better
I know I take B6 at times and as much as it does mostly break down the food like fats and that
If you look on Google it also help with brain development or whatever
I am not to sure but I thought it mentioned that on Google, that it helps with the brain in someway
@@leighhoppins9273it has something to do with genes
@@leighhoppins9273 its has nothing to do with nutrients or anything with food intake some people just have it and its mostly genetic or bad luck
I am in awe of this mother, what a human being.
What a MOTHER❤
My thoughts exactly❤🙏 ..and Dad ☺
And the father too, as well as their children.
I am too. I COULD NOT, NOT, be like her.
I’ve been following Logan’s mother on tiktok for quite a while now. She’s such a great mother, such an amazing family overall. I really do wish the best for Logan, and I hope that one day there will be a cure for sanfilippo syndrome.
Do you know her TikTok? I’d like to follow
@@maryjane4432 its @love_logan07
@@maryjane4432@love_logan07 they don’t post very often anymore because of hate comments. I think they post every six months now but you can still follow.
@@maryjane4432it’s love_logan07
Could you share her channel name then?
Bless this mother. She is full of love and strength.
Noelle turned a negative into a positive. She is now able to help tons of other families going through the same thing. She’s a blessing to those online and Logan
Yes more awareness for this
Mad respect to this mama for recognizing filming her son in his most vulnerable moments and sharing them isn't right. Too many family youtubers disregard their childrens privacy. So 👏👏👏👏 to this mama. I pray your son has many years to come.
He has the best mother he could possibly have. I wish them all the very best.
He absolutely does have an incredible support system at home and what a fantastic mom she is. ❤
Logan was given to the right parents. His mom is an angel. This really breaks my heart. He is just precious. Logan is very loved. That's definitely one thing he has by the millions.
this kid is lucky to have a good family. I've seen kids in other countries with disabilities just become marginalized by society.
Imagine a kid with this up until the last 100 years in the Western world. He would’ve most likely been abandoned or left to die. This still happens in other countries. Truly sad. Modern times is amazing.
She’s a great mom for trying so hard.
Having a child with a disability teaches you enormous patience and strength. I would do no less if it were my son. Keep staying awesome mom!
She is such an amazing mom
Yes she is GOD bless them❤❤❤❤😊
She’s truly a blessing for that brave young man. What a heart touching story. ❤️
God knew what He was doing when He sent Logan to this amazing big hearted string momma! And vice versa
I just can't imagine having a twin brother with this condition, growing older and maturing while your twin brother seemingly stays younger than you. I'm sure he loves his brother and tries to be the best big brother he can be to the brother that should be walking in lock step through life with him. This family is in my thoughts and I can only hope that they can enjoy whatever time they have left with him and that they can get through this as a family
Not only stays younger, but also deteriorates, losing the ability to speak, walk and swallow. So sad.
The fact his mother is not only empathetic towards her other kids’ needs, but also Logan’s right to privacy is amazing. We need more people like her.
So many parents with disabled kids essentially forget they have other children and it’s sad
my son has a home care nurse, and her previous patient had a similar disease. She was a normal baby, then started losing everything at 18 months with no explanation. Turns out she had a very rare genetic problem. The kind that ends in the child losing their life very early on. Progressed to not being able to talk, walk, or see. She could hear though. Loved to listen to stories the nurse would tell her.
I think of that child's parents all the time. I couldn't imagine having to let go of my son. My kiddo has kabuki syndrome, so he mostly just improves if anything. Her mother apparently was ready to let go. It's hard to watch your kid go through something with their health that you can't fix.
What a great mum she has no self pity, she is loving and driven. Not only do I admire her caring for a child with disabilities she shares her knowledge, runs the home while her husband is serving his country and is bringing up 2 other wonderful kids. This lady is amazing, I wish her and her family all the very best😊❤️
That is possibly the best comment I have read on here. Thank you ma'am.😊❤
Logan is precious! So many prayers! What beautiful parents and siblings! 😢🥰🥰🥰🥰🥰🥰
AMEN ❤❤❤❤
❤
Incredible love and care from these parents ❤️
Have never heard of this disease before until now! thank you for sharing
My sister was born with hypertelorism. I can totally understand what growing up is like with a sib who is special. Best wishes to Logan and his family
I swear the mom was a Saint in another life. No way she has this much patience. She's truly amaizing.
The strength this lady possesses is truly remarkable!
I would have never known so much about Sanfilippo Syndrome if not for Noelle and Logan! Thank you so much for sharing your story! ❤
Look at those big, beautiful, blue eyes! This made me cry, seeing all these wonderful loving souls. What an amazing family💓
What an awful disease!! I’m a nurse and I’ve never heard of this I’m also a mom so my heart hurts for them all I’m amazed at his family’s strength especially his mommas I dk if I could be that strong!! Sending them all the love!!❤ Thank you for sharing Logan’s story!!
Noelle is such an inspiration. She is so easy to listen to and so informative in the way she delivers information on this cruel disease. Logan is blessed with the most amazing family and I wish every one of them happiness. ❤
God bless her and her husband for taking such great care and love of this child. He deserves love like all of us. I will pray for this family. You guys deserve to have such a blessing in your life. Don’t give up!
I'm so sorry my great-grandmother had borderline Alzheimer's and dementia it robbed such a great woman of her mind but yet she still had a memory like a steel trap it just took her a few minutes to figure it out and she would always look up at you and say that's not right is it. Best of luck to the family I know it's probably very difficult.
About 6 years ago my Grandma has a stroke and went to the hospital on the night before Halloween I remember my dad telling us she wouldn't come back and we were all devastated she then got moved to the nursing home and she is currently paralyzed on her right side and I haven't seen her in almost three years since I've been out of state in college and last time i sae her she thought i was my dad and we all started to tear up
theres a difference between an older person getting Alzheimers and watching your baby regress
@@wrtpbd there's not a difference it's a sad disease
@@rhettjanes1056 fr it’s depressing regardless
@@rhettjanes1056 While losing our parents and grandparents is so hard, after they have lived a full life, it is much different than losing a son or daughter. We all eventually have to say goodbye to our parents and grandparents , but we should never have to bury our children.
Blessings to Logan and his family!
We love you!!
AMEN ❤❤❤❤😊
@@CHELSEABuckhannon amen!
I've been following her on Instagram for a while and it always makes me happy to see how happy Logan is despite his situation he is really living his life to the fullest and with a great loving family around him.
Logan has a wonderful mother and family. Her sharing Logan’s story brings awareness and education. Her sharing has helped other families get early diagnoses. I am glad the family has a support system and the Navy provides services for respite care and makes sure she is caring for herself so she can be the best for her family.
Logan is such a beautiful soul, I'm greatful that his amazing mother has shared and educated the world about this syndrome.
Life is really unfair, he looks like such a sweet person like an angel and he's so lucky he's got such a strong and loving family. Neither of them deserved this but i hope they endure it and get to spend more happy time together
This guy has the most amazing support system. This mom, brings tears to my eyes. This is what a parent is supposed to be. As an advocate, she has given him a good life. He looks so happy with his dog. That relationship brings him great encouragement I'm sure. I hope he continues to do well.
This video brought me to tears. It’s so beautiful to see a child who go’s through so much have parents and siblings who respect and love him!
I’ve watched Logan’s journey for awhile now and he always inspires me. He is such a warrior and to see his family take such amazing care and go above and beyond to research and keep meeting Logan at his needs with all they do is inspirational
She’s such a great person. The whole family. Love and prayers to them
Thanks for sharing Logan’s story 💝. I’m a special needs parent too. Stay strong 💪🏻👍🏻
I've been following their story for over a year now. Logan is just the sweetest and their family is so supportive of one another. He's definitely got a great support system and all the love a child could ever receive.
I don’t often find myself emotional hearing people’s life stories, but this one broke me down. What a beautiful family. I hope he’s enjoyed his life.
Time passes so fast, never forget these moments. Its really sad to see this and I cant imagine how the family is going through this. He is lucky to have a family who cares about him.
This poor sweet child and mother. My heart breaks for them both. I couldn’t imagine slowly losing my baby. 😢
Im in absolute tears. Noelle is a special woman. I wish i had a touch of her in me. I strove to be the type of mother that she is but i fail every day. She has a beautiful soul and heart. This is an inspiring family - not for their sons disability but because of their amazing love and connections
Oh mu God, I've never broke into tears like this before.. 😢, he's a trooper, and a inspirational kid.
Logan looks very happy and healthy. You’re doing all you can and may God bless you.
I have so much respect for this mother and father and Logan's siblings as well. Instead of wallowing in self pity, they all seem to treat Logan with respect, take him places and play with him on a level he can understand. I wish there was a cure for him. Thank you for spreading awareness of this syndrome to many other patents. Much love from a grandma Arizona. ❤
Thank you for sharing this! You have such a beautiful soul! Logan is lucky to have you for his mom and you’re completely lucky to have him as your son! Bless you and your family ❤
What a beautiful story. Stay strong family. Be happy Logan!
My heart hurts for the family. I hope that her son knows how much his mother loves him and that they share his every single moment with him. It’s scary to know that they’re only gonna have them for a certain time but I’m sure they’ll cherish every moment. what a wonderful mom.
Life is a suffering for many. But having the right attitude really helps. More power to you Mam! ❤
What an incredible family. And Noelle is SO good at teaching and sharing their story with such grace ❤
Thank you for sharing this incredible story! What an amazing young man. Wishing him and his family all the best I pray hard they find a treatment for this. Sending deep prayers for his family.
What a super kid! Such a strong mom and family! Prayers to Logan! ❤
She's such a great mother. You can tell she loves her child.
What a beautiful soul that mother has to love her son and to focus in on the moment that shows the reflection of how beautiful her son is
Logan’s happy sounds tickle my heart.
God bless Logan and his family ❤
this mother is amazing. this poor boy :(
What an incredible family. I'm glad they have each other and wish them the best.
Logan couldn’t have been blessed with a better family. Life can be so cruel and unfair at times. But the love you show is immeasurable and impeccable. Btw, Logan has the most beautiful eyes. ❤
The bed at home is awesome and the tent one for travel is such a good idea.. He's so lucky to have the great parents he has.
Noelle, your sweet boy Logan loves his Momma too, he has your beautiful eyes. What a lucky boy he is to have such a special family to love him. Prayers for you all.
As a grandmother of a few special needs grandchildren, I applaud you, hubby and family for all that you’ve done ❤!! Thank you for sharing!! Please give all your kids an extra hug for me ❤
What a strong family! So happy to see a family stuck together when things get tough! support from families, friends and and hospital workers! Hopefully Logan and his family will get through this one way or another!
Go Logan! ❤
We have the same profile picture!
@@abcdefg4570 omg twinsies ❤️
@@blankspace291 Woah!! 😆
Im so sorry this happened. I completely understand what you mean about mourning for the life you thought they would have. Our daughter was diagnosed with autism when she was 3. Thankfully she's not terminal,but she will live a different life than I planned/imagined for her 💚 Hugs for you and Logan and your entire family 💚💚💚
I have two with Autism. I feel so nervous thinking about their future when I am not around. Is your daughter non-verbal?
This whole family is amazing. Great people to have in the world. This isn't hopeless because mom is paving the way for other families suffering. Definetly turning it into a positive.
Thank you for sharing Logan’s journey. He’s a delightful kid, and most fortunate to have his family for complete support.
What a beautiful young man ; and his mother is amazing ! Wishing their family a lifetime of love, laughter, health and happiness 💜
Such a well spoken and knowledgeable mama. God bless your family.
Logan is such a great kid. Hes in a perfect family that provide all his needs... Thankyou for making the world aware. Its devastating that said Logan is super happy and contant. Love to Logan and his family... x
I saw Logan on tictok with his mother and he seems so happy and able. Even with the odds, Logan has found a way to express himself and its beautiful.
What an amazing family. What an incredible mother❤️🙏
So much love for this young man! His mom is amazing!
My heart just aches for this family. I watched my great-grandmother suffer & eventually deteriorate for almost 20 years from Alzheimer's. Its so unbeliveably cruel to watch and the family feels helpless. I can't imagine watching my _child_ suffer that way. I wish them nothing but peace and comfort ❤
ETA: What an INCREDIBLE mother she is! She is on top of everything and understands her son inside out. I'm so impressed and in awe of her.
Beautifully explained about your special child.
I’m praying he will have a good near future with his family & enjoy life to the fullest with help & his friends along the way. He is so precious & handsome kid!
It’s so good to see the news report on something heartfelt and eye opening. Prayers to Logan and his family!! I wish them all the love and happiness in the world. ❤❤❤
Wow!! What an amazing mom....much blessings to the fam. 💜
I love
Logan so much I follow his mom on every social media she has. He’s such a bright light in life.
This is so sad. Blessings to this family. He looks very sweet and good natured.
Such a wonderful beautiful son and beautiful mom who's a hero and loves her children so much .❤
I love this family been following them for a long time. Logan has such a beautiful, strong amazing mother!!
Logan finally got featured!! Been following for almost 3 years and I’m so happy awareness is spreading!
Thank you for sharing your story . Your beautiful son is fortunate to be loved and supported by his cheer team! How wonderful it is that you celebrate him often.
I'm happy to see that he's getting the proper care that's needed in order to give him the best life possible. ❤
Poor kid. Pray for him.✝️
@@mrfroghelloHe will
@@mrfroghelloI like that
It’s a terminal disease
He seems happy and that is what is most important. Thank you for bringing awareness to this.
This was so informative! Thanks for sharing and thankful for mom’s generosity and patience with her storytelling. Go forth Logan!
I follow Logan's mother on Instagram, i'd never heard of this horrible disorder before then. What an amazing mother she is. Logan is so happy and smiley, it's so unfair, i so hope for a cure or a way they could stop it progressing.
My cousin had this, but was misdiagnosed all his life until a week or two before his death. When he first started regressing as a toddler, he was diagnosed as autistic. That's what we all thought he had, all those years. For a long time, we really believed he was "in there" and just couldn't communicate. We heard stories about nonverbal autistic kids learning to communicate either by starting to talk or by using computers or other machines, so we were hopeful that he'd get better one day. But he didn't, he just kept getting worse and worse. Taking care of him was a full time job for his mom. Towards the end he stopped being able to use the toilet and stopped sleeping - his parents got very little sleep because they constantly had to stay with him since he would do things that could be dangerous (not knowing what he was doing.) He actually lived really long for someone with this syndrome - he was in his early to mid-twenties when he died. I just wish he had been properly diagnosed earlier. He went to an autism specialist several states away who is very well known, but despite seeing him several times a year the doctor never figured out that this wasn't autism. We were all just shocked at the end when my cousin went downhill so fast and then died, since we had no idea that he actually had a terminal illness.
Thank you for sharing your story, I'm truly sorry for your loss and your cousins suffering.
So sad. Yes autism diagnoses really should be probed more. The diagnosis is based on symptoms not etiology and perhaps many kids could be helped or at least the family give more clarity.
What a beautiful child. Praying for him and his family!
Bless your heart for sharing your story 💖 Ty for welcoming all of us into your home!
That’s a wonderful story ❤️
Handsome chap. I wish him a longer life than predicted. Seems like a wonderful kid❤
Thank You for sharing this family’s story 💞
Thank you for sharing such a beautiful story of love, bravery and acceptance.
You have such a wonderful family.