Our diagnosis journey Cornelia de Lange Syndrome

[@marybodnar4749]

With all the different possibilities of genetic variations it’s a miracle that most births are “normal”. It’s absolutely exasperating all the diseases that are possible!! Freya is just darling. Cutest ever🥰

[@Freyasluckyarm]

Thank you

[@chrisa1146]

I, like others here, follow Sebastian, Stephanie and Gio and now you and Freya have popped up into my feed. What a beautiful little girl she is! ❤ I got the biggest kick out of her little foot poking up into view toward the end, just wriggling around. So cute. 😂 I will continue to follow both you and Stephanie and your respective journeys with your adorable children. Blessings 🙂

[@Freyasluckyarm]

Thank you.

[@Janeth69]

Omg sebastian❤ such a sweet baby

[@KathyRopa-uk9ws]

She is beautiful with that adorable smile.

[@Livinglife595]

So many people have probably said this but Freya is so pretty. She’s like a doll

[@Freyasluckyarm]

Thank you

[@barbb-g7077]

I absolutely love when Freya joins the conversation; I adore her chatter!🥰 Your journey is well communicated. So much respect for you and your family. ❤

[@Freyasluckyarm]

I totally agree! Love hearing her voice

[@peytonbrand2019]

@@bettablue2660 Please find your way onto other channels that need your approval 😊

[@jewelhaines8842]

Hello! My daughter was born in 1986 and diagnosed with Cornelia De Lange syndrome. I had a normal pregnancy. I was 23 years old. My daughter is now 36 years old and lives in a group home for disabled adults. She is high functioning, reads and writes and is verbal. She has alot of behavior issues. God bless you and your beautiful little girl!! My daughter also has the arched eyebrows and thin lips. Nicole also has feeding issues, and she also is not potty trained.

[@nadiafedorova3438]

Not potty trained at 36, but reads and writes? Or had prior long term difficulties potty training, you meant?

[@jewelhaines8842]

@@nadiafedorova3438 I apologize..I just went back and reread my statement. My daughter was fully potty trained by 2 years old. For some reason, unknown by Doctors, she began having accidents. The group home staff started putting her in the adult diaper underwear which seem to work. Most of the time, she can make it to the bathroom. I believe it's a combination of her having a behavior, and she is on alot of medications that make her very sleepy sometimes and I think she might just not make it, that happens at night mostly. She is on a sleeping medication that knocks her out, so i think she just doesn't wake up to go. Also, her medication has caused her to gain a lot of weight..I think it's a possibility of any or combination of these factors.

[@jewelhaines8842]

@Nurse zemo Well, Nurse Zemo. You really shouldn't speak on things you have no idea of what my daughters situation is, or my situation. Why don't you keep your ignorant comments to yourself. I love my daughter more than life itself. If you think I need a strangers approval, you are sadly mistaken. You are a ignorant person.

[@irenedavo3768]

@@nursezemo822she may need two helpers! Mum could be unwell

[@irenedavo3768]

@@nursezemo822you never know what life will throw at you!

[@peaches2839]

I watched your story after Sebastian's mom talked about Freya. Your daughter is beautiful. What makes me happy is there are these groups to help parents with coping and learning. When I was growing up there were children in our community called mentally retarded. It seemed like families kept them hidden. I always saw them as special sweet souls and thought they should be included. Thank you for sharing your story and Freya with those of us who are curious. I only wish to share love and light.

[@Freyasluckyarm]

Yes it wasn’t that long ago that people disabled individuals were not allowed in school

[@irenedavo3768]

@@Freyasluckyarmis this condition all across the World

[@irenedavo3768]

Freya is Unique!

[@olguiq1013]

Same... Well said

[@olguiq1013]

😂.... Freya you made my day... A Total GIRLIE, we always have something to say. ❤

[@maddex2000]

1:8,000,000,000!!!!! We already knew she was pretty darn special.💜

[@Freyasluckyarm]

Right 😂

[@jaydee9124]

You have been blessed with a darling wee girl.

[@BabyMonkeyDefender]

You. Are. A. Beautiful. And. Awesome. Mom! I especially loved how you interrupted your moment to let that angel share her thoughts 🥰🥰 Keep on being wonderful mommy. You're doing great. Don't forget to take the best care of YOU too. Many hugs and best wishes to you and your sweet daughter.

[@Freyasluckyarm]

You are so kind

[@hannahs6701]

When you have a disability, and you’re struggling to find answers, negative or inconclusive tests are so frustrating. I’m happy you have answers for your sweet Freya, even though I know it’s tough news to hear. I’m glad you have resources and a community that you can rely on.

[@Freyasluckyarm]

Thank you. I am so grateful for the community. They are lifesavers when they doctors don’t know what to do.

[@sshaw4429]

She looks like a little doll. Hugs to you! ❤❤❤❤ you have both stolen my heart.

[@liveiria]

She’s so cute and precious! 🥰

[@Freyasluckyarm]

Thank you

[@Bethanyview]

You are an amazing young woman and mother. You are open and honest and welcoming and loving. It’s a pleasure to get to know you and Freya. She is a true blessing.

[@karrie1377]

She is such a beautiful treasure.

[@isabelgomez8095]

You're a wonderful Mom, a very smart and strong person. Freya is beautiful and a gift sent to you. Enjoy every minute with her and your other kids. God bless you and your family! Thank you for educating us.

[@Freyasluckyarm]

Thank you so much!

[@sherry8894]

Freya is just so adorable 💞 I actually just found your channel yesterday,as it popped up on my feed. I have been watching another family that has a child with the same syndrome and I have been learning alot. Now I shall go back and forth watching you both! Thank you for sharing your story! Much love from Ohio ❤️

[@Freyasluckyarm]

Thank you so much!! I’m so glad you found us

[@KrissiCreates]

Same here ! Following Sebastian George. Stephanie George. She's beautiful just the way she is !!

[@misslottieish]

After following Sebastian and I am sure you have seen his videos all I can say is you should be thankful so thankful..

[@Freyasluckyarm]

Yea we have followed Sebastian a long time. CdLS is a spectrum and there are kids that are walking and talking by two. I am so thankful for a Freya’s health but would also love her and accept her no matter where she fell on the CdLS spectrum.

[@evaklaassen4907]

Yes Freya can see, hear, play and move around, she has it very mild. Sorry about my englisch

[@jennifer_duncan]

Thank you for sharing this! You convey the emotional complexities of a rare diagnosis with honesty, beauty, and grace. ❤

[@Freyasluckyarm]

Thank you so much.

[@godgang8818]

She's thriving really well compared to a lot of others. Just the cutest lil girl I've seen❤️

[@Freyasluckyarm]

She is doing amazing. We are so happy with her progress

[@annefoley7369]

You are a wonderful Mom to your baby girl. Sure, life doesn't always play out as we would like, but just listening to your story makes me realise how lucky is Freya to have you as her loving Mom. My prayers are with you and your family.....❤️🙏🇮🇪☘️

[@Freyasluckyarm]

Thank you!

[@mariamckenna808]

What a journey. I can't imagine Freya is adorable. I have so much respect for you. You seem like a very centered person. God Bless You

[@Freyasluckyarm]

Thank you so much!

[@brittanybrit6944]

Awweee what a sweet heart ❤she is telling us !

[@kathleennelson6692]

Your little charm is adorable. Give her a snuggle for me. Love from Utah

[@Freyasluckyarm]

We are in Utah too

[@Trisha-uh1gb]

She is so precious! She is talking! God bless you and your family

[@Freyasluckyarm]

She has a lot to say 😂

[@fishingexplorationeastcoas1346]

Shes beautiful! Consider youself lucky she will be little longer !! Kids grow so fast …. Its a bit different but i had a really hard time with my sons autism diagnosis so i can some what relate to dome of the struggles. Your a good strong caring mom thats all freya needs to live a full happy life

[@Sunnysunshine208]

She is such a beautiful little girl.

[@Freyasluckyarm]

Thank you

[@patshifflett4205]

She is adorable and you are courageous

[@vickiefinney6073]

Found your channel from Stephanie and Sebastian's channel. You mother's are amazing women. God bless you and your child 🙏

[@Freyasluckyarm]

Thank you so much!!

[@godgang8818]

She is the cutest lil CDL cutie

[@loraineleuschke4186]

Bless you all and that beautiful little girl. 💐💋

[@stephanieann622]

Marcy, you are such a great mama. My feelings would have been hurt too when the specialist was telling you what all was “wrong” with Freya. No matter what, our babies are perfect to us mommies. That had to be devastating, waiting so long for a diagnosis. I wish you and your sweet baby girl nothing but Love and Good Health💖 thanks so much for sharing her story with us🤗

[@Freyasluckyarm]

Thank you

[@mpardo4019]

I’m a new subscriber 😊. Your daughter is beautiful!!! And you have such a beautiful soul to care for her the way you do. Blessings 🙏

[@Freyasluckyarm]

Thank you so much!!

[@dollfactory]

Thank you for sharing!! You're a great mom and Freya is a very lucky little girl 🌺

[@Freyasluckyarm]

Thank you so much!

[@rebeccahylant7695]

You do an amazing job explaining a complicated syndrome

[@Freyasluckyarm]

Thank you

[@ailsamallison3061]

She is just adorable ❤

[@Freyasluckyarm]

Thank you

[@brenmanock]

Greta is so cute. She’s very active and smart

[@TheMrKristens]

I understood the diagnostics completely. Getting our sons (yes, both of them) diagnoses was such a relief. Of course the grief came...in stages, but goodness it just felt like I finally had a path. Helping them was easier because I wasn't second guessing 'what if it is something different'. I just felt immensely better. They are both teens now and life has been so much more than I could ever have imagined. Of course the road hasn't been straight, but life is amazing. 💗💯💗

[@Freyasluckyarm]

Yes I love having a path and knowing we are on the right one

[@AtomicBlonde1]

I pray all the bestfor you and your family. Very couragous informative honest telling of youf story. I am so imprezsed with your compassionate acceptance to live the life you have been blessed with. Shining example

[@Freyasluckyarm]

Thank you so much!

[@kalm50059]

Freya, you are so beautiful!!! Glad to meet you and Mommy!!!

[@Freyasluckyarm]

You too!!

[@brendaeaster8874]

My daughter, who is now 34, was born with Opitz syndrome. It is fairly rare. I was shattered bc I had passed my amniocentesis with flying colors. I will share more about Denise later. God bless your family❤!

[@VensVibrantNailsandBeauty]

I have felt that dual emotional response is absolutely real! I've done it for my child with his diagnoses, and for myself with my own diagnosis. It is emotionally complicated and I think it's good to know that it is totally normal, and it's healthy to hold space for and explore/ process all of the emotions that can arise from these experiences. Thank you for sharing your story! You show such courage to step forward and say this is normal to feel this way. I admire that so much.

[@Freyasluckyarm]

Thank you. It is interesting to feel both so deeply at the same tine

[@VensVibrantNailsandBeauty]

@@Freyasluckyarm Holy Cats, Yes!! I think we try to keep them all separate and organized,, like keeping your food from touching. Man, we want so much to be in control that we don't realize that emotions only have the power we give them. Instead of fighting about how much power each emotion has, I decided to just make them all allies, so then it didn't matter. Or, think of it as stirring your Neapolitan ice cream a little to get a blend of all the flavors. I speak in analogies, sorry if they are weird or don't make sense. Ask and I can try to clarify (probably in yet more analogies 🤷🏽‍♀️)

[@Freyasluckyarm]

Oh no I thought it was great

[@lindafontanesi501]

Thank you for sharing your story ! Your daughter is beautiful !

[@Freyasluckyarm]

Thank you so much!

[@paulanewhouse4252]

I really like her name. That is so pretty. Sending you love and prayers.

[@Freyasluckyarm]

Thank you it is for the Norse Godess

[@AnneluvsKatz]

I’m glad you found your answers ❤. I’m sure it was a frustrating journey. Best wishes as you all move forward and find ways to help your daughter achieve her potential.

[@Freyasluckyarm]

Thank you so much!

[@nancyp2992]

Freya is a sweetheart

[@iloveshaakah]

Adorable baby❤

[@Fritz0616]

My grandson was diagnosed with this rare syndrome at age 6-months he is now 4-yrs old my heart is with your precious daughter.

[@Freyasluckyarm]

Thank you

[@antjeneumann17]

What a journey...she looks similar to other kids with cdls. But your babygirl is way more than a diagnoses!! She is a very cute little girl...🩷.. I also watch Stephanie with her cute cuddlebug Sebastian her on KZbin...

[@Freyasluckyarm]

I always joke that cdls is the third parent because our kids look like us but also they somehow all look like each other

[@helenfitz3911]

Freya is adorable 😍

[@jguitar23]

Wow, great explanation! Bravo❤

[@Freyasluckyarm]

Thank you! 😃

[@nancycurtis488]

In the late 1960’s, I babysat for a young woman who had three little boys. One was about 10, one was three and one was 9 months old. The oldest and the youngest looked, and were 100% normal but the 3 year old looked more like your daughter’s brother than a brother to either of his brothers. He had very thick eyebrows, thin lips, his ears were more oddly shaped, he was mostly non-verbal, and he wanted his mommy…I could not make him happy at all where as his baby brother was happy with me taking care of him. The mom said that her oldest son weighed close to 9 lbs. at birth and the youngest weighed a little over 9 lbs. at birth but Jeffery, the three year old had only weighed 6 lbs. at birth. The mom told me that Jeffery had a mental retardation disorder called Cornelia de Lang Syndrome so maybe that means sweet, sad, little Jeffery was one of the early children diagnosed with this syndrome in Irving, Texas…I don’t know but I have never forgotten these three little boys and their very caring mom and have always wondered what happened to Jeffery and his brothers. Odd thing is that I only have only two nieces who belong to my only, older brother and the oldest of these two has a rare genetic mental retardation disorder called Prater-Willie Syndrome…..what are the odds? I hope Freya has a happy, healthy life…she is so lucky to have a determined, proactive mommy….good luck sweet Freya.

[@pattyespinoza1217]

Brand new to your channel…Freya is precious!

[@Freyasluckyarm]

Thank you

[@charlieoglesby3468]

I'm just joining your page and watching your videos. Your kids are all beautiful ❤️ 😍 you're wonderful. I also watch videos about Sebastian. Your all wonderful parents.

[@Freyasluckyarm]

Thank you so much 🤗

[@pepperpot48]

What a beautiful little girl❤

[@Freyasluckyarm]

Thank you

[@charleboisb]

My daughter has CdLS and is 38 years old. She was diagnosed when she was about 4 months. The Geneticist told us she had CdLS, I would be depressed and angry and that my daughter would be dead in one year. As you can tell, he was very wrong! I could tell Freya had CdLS just by looking at her face. I'm sorry that it was such a drawn out process for the doctors to confirm; it must have been maddening! When my daughter was very young and we went to the first medical conference, she was the only blonde headed child they had ever seen! You have a great attitude in your acceptance of this curveball of having a special needs child. I hope that your road is much easier than mine has been. I would suppose it is because of some of the attitudes which seemed to have changed in 38 years. If you would ever like to contact me directly, I would be happy to speak to you...I just don't know how to do that privately.

[@Freyasluckyarm]

Thank you so much. It was a very long process but I’m glad we got there. Some attitudes have changed and I’m so greatful but a lot haven’t. I’m hoping it just gets better and better

[@jewelhaines8842]

This is so awesome! My daughter is 36 years old!! With CDLS. Do you get the newsletter "REACHING Out"? It's a wonderful newsletter put out by the CDLS foundation.😊

[@elinhagglund33]

She is so beautiful . ❤I have a 17 month old with goldenhar syndrome and duanes syndrome. He has it very mild they luckily think. But it was and is still a chock to me . We are still waiting for the genetic testing result to get it 100 percent confirmed. I know your feeling of Wanting the diagnosis to know but also greive it ❤ thank you for sharing your story.

[@Freyasluckyarm]

I hope you get the results back soon. It is such an odd thing to feel such opposite feelings at the same time

[@rosesippel2932]

I as other follow Stephanie Gio & Sebastian then Freya popped up on my feed she has to be the most beautiful little girl I will be following her journey & Sebastian for as long as possible you & Stephanie are strong woman good moms May God Bless your family

[@Freyasluckyarm]

Thank you

[@mariamckenna808]

Thanks for sharing. I love ur channel

[@Freyasluckyarm]

Thank you so much!

[@cindypackard9597]

Your daughter is so cute oh my goodness ❤

[@Freyasluckyarm]

Thank you

[@brendariehl5086]

Adorable little one 💖

[@Freyasluckyarm]

Thank you

[@JennyLouRN]

😂😂😂I was watching Freya in your lap, then next thing I noticed was just a little foot waving! I had to rewind to see how I missed her disappearing trick 🤣

[@Freyasluckyarm]

She does it constantly. So cute

[@marypaquette8705]

She is a lovely, cutie pie❤ kisses😊

[@angelaegan7511]

Yes, watch Stephanie George, she is a wonderful mummy to little Sebastian.

[@kendraolson9001]

Watch Stephanie George her beautiful son has the same thing

[@Freyasluckyarm]

Stephanie Sebastian and Gio were the first family we found after Freya’s diagnosis. We love them

[@garsu1229]

That is how I found you!! Both amazing mom’s❤

[@brendariehl5086]

I also been watching Stephanie George love ❤️ watching her show

[@evaklaassen4907]

I also watch Stephanie George! Greetings from germany

[@mickamoo1]

Such a precious Angel❤️

[@kathyerb3134]

I have subbed , from Canada. Watched your birth story but haven't seen your pregnancy story yet. You have a wonderful family. FREYA is a beautiful girl. I know what it is like to find out a child is born with a very rare syndrome. Lung disease called Immotile Cilia Syndrome now called Primary Cilia Dyskensia. At age 4, 3 mths mths later missing a kidney. Severe asthma at age 14 mths, whooping cough at 3months. Spent a lot of time in first 4 yrs in Children's hospital. Physio therapy every day. Now age 37 with 4 kids, none have same disease but have other diseases, including 2 kids with a very rare disease found on KAT6b gene Ohdo syndrome.

[@Freyasluckyarm]

Rare diseases are so difficult just because of the lack of information

[@ElectricSizzler]

Just love that sweet cutie pie of yours she so beautiful. I follow another young lad he's 5 his name is Sebastian and he has cdls to not sure if you follow Stephanie George thats Sebastians mom. But ya you just popped up in my suggested videos so I just want to follow along your journey and support you guys. Freya is just a cutie pie and you are such a wonderful and amazing momma. Much Love 💖 Kalena

[@Freyasluckyarm]

Yes we love Sebastian too

[@Shortstuff841]

Heard about you from Stephanie re:Sebastian’s channel - really like your video❤

[@Freyasluckyarm]

Thank you so much

[@margarettorres9156]

She's so cute thank you for sharing

[@Freyasluckyarm]

You are so welcome

[@Contessa6363]

Yes that does happen I was a single parent with a special needs disabled child.

[@BrendaEaster-c8k]

Hello, dear people, my daughter was born with Opitz Luemell syndrome and I, too, was told she had a syndrome, her features were normal looking but had a few other characteristics of Opitz and I was heartbroken to think the baby that passed her amnio was not normal. Like your daughter, my daughter almost immediately lost 9 to 10 lbs. She was not fully diagnosed until 9 months.

[@Freyasluckyarm]

Thanks for sharing!

[@kathyerb3134]

Viewing your dx story now.

[@leasarmy87]

It took 12yrs 12yrs just to get my smith magenis syndrome diagnosis and that causes the autism the scoliosis which I was diagnosed with the year prior the weight problems my squirrel 🐿️ cheeks All that caused by the SMS and my genecist with Boston children's was the only one that suggested the exome testing and I dealt with genetics in the past with BMC in Boston MA and they didn't even suggested the exome testing so I was undiagnosed with my SMS for 12yrs but when we got my SMS diagnosis on June 23rd 2020 when I was still 12yrs old because my 13th birthday was just around the corner luckily I was diagnosed with it just before my 13th birthday

[@Freyasluckyarm]

It can take so long!

[@TupacsHomegirl]

freya seems to be doing really well

[@Freyasluckyarm]

She is doing amazing

[@vdeniceeckert3494]

Oh my I just found you I thought she was an infant. Lol. Awe. She's doing great

[@Freyasluckyarm]

She is doing great!

[@lovebug8482]

may i ask why people dont get amniocentesis? what are potential risks or is it more about just taking things as they come?thx!

[@Freyasluckyarm]

There is a risk of miscarriage. Risk of hitting the baby with the needle. Risk of infection. For us it wasn’t worth the risk. We would not terminate based on the outcome. Basically didn’t want to add any more risk to an already high risk pregnancy.

[@Chronically_JBoo]

My sister dad and I have a different rare genetic disease my sister and I got it from our dad. I was diagnosed first as an adult then 7 years later my sister was diagnosed and recently my dad has been

[@Freyasluckyarm]

Isn’t it wild that some people can live their whole live and not realize.

[@nancycurtis488]

And, I am so sorry…I don’t mean that your precious little girl is not normal…whatever “normal” means in this crazy world of ours. We are all “normal” in our own way…we are all special in our own way as well. I can tell just by your interactions with Freya how much you love her and that makes such a difference. I can remember when I was a child hearing about doctors recommending that parents….and I shudder just to remember….put children in “ institutions” and when they recommended that babies born with spina-bifida be allowed to get spinal infections, not be treated with antibiotics so that they would die….how horrible and thank God, they can now do fetal surgery. Medicine has made huge strides and hopefully there have been huge strides in helping children who have special needs as well so you and Freya can take advantage of them to bring out her full potential for a good, good life. Freya is a beautiful little girl and is so lucky to have you for a mommy. I had 2 sons and 5 daughters and have 21 grandchildren…believe me…every one is perfect…and every one is not perfect…including me. Enjoy her…she will be grown up before you know it!

[@Freyasluckyarm]

Thank you. That is amazing that you knew some one with cdls

[@kathyropa6174]

❤🙏🏻

[@RonaldReagan7777]

❤ 🙏 😊

[@kimtillman5683]

I thought you had 3 or 4 children before Frya ? I must have been mistaken, anyways yes being a new mom and hearing this would be hard, even not being a new mom it would have been hard , anyways she’s beautiful ❤

[@Freyasluckyarm]

I had 3 before Freya. I just meant having a new child

[@JaniceTaylor-it3ed]

Freya😊

[@rubyrainmaker]

A friend of mine has a daughter with the same thing.

[@Freyasluckyarm]

So cool! It’s a small group of us

[@Contessa6363]

But she has the features that make Cornelia de Lang syndrome unique

[@Freyasluckyarm]

She does. There are a couple different syndromes that are very close to cdls featyres

[@isabellavalencia8026]

@@Freyasluckyarm do you believe in her diagnosis?

[@ninademci1500]

Marcy, no wonder no one likes the Geneticist. In my opinion, it wasn’t the bad news, it’s her attitude and she was Miss Negativity.

[@ninademci1500]

Marcy, Freya’s a beautiful little girl!

[@Freyasluckyarm]

Definitely

[@nancyjones6428]

I think that your synopses was good however nothing was mentioned regarding symptoms, personality or the hardships a parent may face.

[@Freyasluckyarm]

We have a separate video for what cdls is

[@Emptynestballerina1]

I feel it’s unfair to blame the doctor for symptoms that are clearly caused by the syndrome . The doctor didn’t en pregnant you ! There not responsible ! I feel that’s mean spirted .

[@randymcgee2603]

She sits up and looks so alert to have that syndrome! He's isn't near as severe as some! Beautiful little girl

[@Freyasluckyarm]

Cdls is a spectrum. I would say Freya is moderately effected

[@raquelmurillo8791]

❤️Loved your story, I'm interested in Genetic syndromes. BECUZ, my daughter's was found by accident. She had been, in horrible car wreck airlifted to hospital. She was living in another city, and her boyfriend/family didn't even bother to call n tell me. She sent me a pic of her leg in cast, arm, and in bed. Shocked, things get even more complicated. Prior she had, lost my 1st grandson "still birth" they didn't know why, he had a cleft lip. My daughter, had a cleft palate, we didn't know til, her 1st dental appt. I still, can't remember how a geneticist 1st saw her, after car wreck. He also, was professor at University. He right away was curious why, her baby died. BECUZ, he noticed facial features associated with certain DNA syndrome,in my daughter's face. He asked for maternal/paternal medical history. I lived out of town, taking care of Dad Stage4 Cancer, Mom Alzheimer's, so I couldn't leave. I filled out papers with history, back n forth. It took almost year. He had geneticist from 3 other countries, study my daughter. Conclusion: She has DNA DELETION syndrome/ DNA DUPLICATION SYNDROME. They were in awe, BECUZ PPL with both usually don't live past teens & most are NONVERBAL. When diagnosed my daughter was 20 yrs. Old Verbal, had hit all developmental mild stones. But, soon after her health began to deteriorate, her speech, slurred, uncontrollable Seizures, she needed brace crutches, her left leg dragged. Thanks to these Geneticist my daughter is alive, today. She has undergone 2 brain stem cell therapy, rounds of chemo. She has Broad spectrum AUTISM, ASPERGER'S, Immunocompromised, After, BRAIN Stem cell therapy,CHEMO rounds, extensive physical therapy the seizures stopped, her speech improved n no longer needed crutches to walk. She is in Genetic Medical Journals, BECUZ, she's still one of few oldest ppl still living person with these 2 Rare Syndromes. Our family blood, paternal/maternal was mutated due to Malaria n my Dad unknowingly was given homemade Malaria remedy 👉it was pure Quinine, which he took for a year. Finding out about my daughter's syndromes explained, my health problems, our family have rare different blood types and more. I'm fascinated by all DNA SYNDROMES, etiology different stories. You are a wonderful Mom, touched my heart, your Angel, your drive to want to know everything, your 💕 love. Thank you, for sharing your life and Labor of Love, I truly believe it's PPL like your Angel n my daughter, who can help others find answers to DNA SYNDROMES, research is so important, therapy like Stem cell therapy, has advanced, we must never stop fighting, learning, accepting and sharing our stories.May God Bless You n your Family, ❤️😘Thank you, FREYA you are a Lil Warrior 💪💥 and Angel... 🕊️🌿Peace be with You All... Shine On... Freya ❤️😘

[@Freyasluckyarm]

Wow what a story! That car wreck saved her life