My Son's Diagnosis Changed Everything - The Shocking Journey I Never Expected 

Your son is blessed to have such a caring mother.

Bless you warrior mama! Prayers going out to you and your family. 🙏🏻

I have Evans Syndrome, it has been my observation that adolescent cases are much more volatile. Although we are grouped together. But the children are so much scarier. While I know that doesn’t bring you comfort, but I would say prayer is so helpful. Do everything you can do, and leave the rest to God, or you will drive yourself crazy!

You are such a great mother! I know you'll make the best decision possible for your son's treatment, you are doing the absolute best you can.i know you are questioning a lot right now, but don't ever question that ❤ I have heard of hemophilia, but never knew much at all about it, thank you for sharing!

I CANNOT stop watching! You are a STRONG WOMAN, and, as a nurse, you have taught ME so much! Again, GRATEFUL THANKS! ❤

U nd ur family have my Positive Energy nd Prayers 4 ur beautiful baby boy 💜🙏🏽💜🙏🏽

❤❤❤❤❤❤

We are all so different, I use DDAVP and HUMATE P. Not knowing we are bleeders is more scary, I almost Bleed out 2 times. I thank ppl who give blood. Because I have needed blood transfusions. I do have a power port. I love it. Once healed it's not bad. I am almost 55. We can live a pretty normal lifestyle. No one in my family has the factors either. Only me. They also have a nose spray, my hospital had to order factor for me just in case. He can live a long life. You can reach out to me any time.

Hi Jess my name is Pearl. My heart goes out to you big time. At 3:37 p.m. today My son will be 37 years old. 4 weeks before he turned five I had to take him to the hospital. He didn't have hemophilia but he did have something called ITP... His platelet count was 3000. The normal range is (150K--400K). He is fine today but for 2 years we didn't know what his outcome would be. I am so glad that you have a support system. There is no support groups 32 years ago. I don't know what area of the country you live in, I live in Illinois about 20 mi from St Louis Missouri. You have a long journey ahead of you and life will not be easy but it will be rewarding. I understand the caution that you will feel with your son yet you also need to balance that with trusting your instincts. If you ever need a sounding board I would like to be there for you. I'm glad you have family nearby and if you have a strong community within your church that will be an extra blessing as well. Feel free to ask me any questions whatsoever.

You are a wonderful mother ..both you and your son are fighters ... May God be with you and your family.

First, please hold unto the truth that the Lord formed every part of your children's bodies & He loves them--and you & your husband. Please read Psalm 139:13-16. Enjoy your children today. Jesus says "Do not be anxious for tomorrow for tomorrow will worry about itself. Each day has enough trouble for its own" [Matt 6:34]. Secondly & I'm being a bit facetious with this: it seems like you're already doing a practicum in Trauma Counseling in your own life. Maybe your degree program would accept your channel towards your masters, heck go straight to PhD?

Had my first Hemophilia, factor 8 deficient baby boy at age 23, he was 2 weeks late. Had a fractured collar bone, blood capular on top of his head. When they brought him to me his heel would not stop bleeding from the 1st stick. They had no idea why ? Put him in the NIC unit to run tests. Ended up giving him blood transfusions, PKU levels would come up as long as transfusing, he lived 4 days. Autopsy revealed he had a tear in his liver which is what killed him & the fact that medical staff had no idea how to treat him. My mom & sisters & I went to be tested, all carriers of Hemophilia. I'm factor 8 & 9 deficient. 17 years later had my 2nd Hemophilia boy by c-section. Put padded matt's down when he started crawling & he wore a helmet. Got his 1st Port-a-Cath at age 3, infused him 3 times a week. He's now 19 on his 2nd port & he infuses himself w/Advate. Broke his arm in 1st grade. Has Arthritis in his growth plate in his elbow. You just have to stay on top of it, your precious child from God will be fine❣ Hemophilia Federation of America HFA is an Awesome resource.

You’re a wonderful mother. Blessing for all of you. 🙏🙏🙏🙏❤️❤️❤️

You can look into treating him with Ayurveda. Blessings to you, your baby boy, and your family

Have they mentioned Pediatric Rheumatologist?

You are a good mom. He is lucky to have you and his dad their to love him. And of course big sissy ❤

As someone with Hemophilia B I can say that you boy will be fine, every now and than I will get some bleeding in the joints but with tretments it goes away in a day or 2, just do his treatments regulary and most importantly dont raise him under a glass bell. In my case I take my factor once a week and living my life normally. Its not gonna be easy but it will be fine in the end.

Prayers for your family keep fighting ✊💜💜💜 remember you are important and there is always someone there who cares for you. YOU MATTER 💜❤💜

🙏🏽💜🙏🏽💜🙏🏽💜🙏🏽💜🙏🏽

Hugs to you beloved parents. Lets even die for our kids. Bcz we are prtectors pf them. Love and hugs each one of you.

Praying for your boy❤❤❤❤

You're a warrior, Jess. Please, keep being strong. Can gene-editing solve his case? I just read an article on that. I don't know if you have come across it.

You and your husband are very brave God bless you both and prayers up that your journey is a lot easier than anticipated. 🙏🏾 New subscriber.

don’t worry, everything would be fine !!! I am sure !

I don't talk this way too often, but my younger son did go to parochial school from 3yo until 8th grade. He now calls himself an atheist, but when he does go to mass w me he doesn't do communion, but will chase a priest down to do a confession (which I don't even do). So, he'll figure out his agnostic confusion when he's older. Something he used to say to me when he was a child was something only my almost genius son could think of, & he talked to me about it many times..... He'd say, "Mommy, when you were a little girl & I was w God waiting to be born......" Now, there is the part in the Bible (Isaiah 49:15) that talks about being carved in the palm of God's hand. I don't know if my son got this idea from that, but the idea that he thought he's always existed, he was just waiting w God b4 God chose me & his father to send him to, I thought was adorable, special. Now, if we look at your children the same way, they've always been w God, even when you were both children. God needed someone special for your angel son. W what you've been thru, he knew you were strong. I'm a survivor myself. Plans might be put on hold, but you're young. I went back to school & got me Degrees when I was almost 40. Keep your support groups, from parents who know. & LOL at 16 & sex ed! That's hilarious! Drs have to stop going by the book & look at the age of their patients! You're awesome! 💕😻😻💕😷

I can't even imagine a Mother abusing her baby. I know it happens everyday alot more than what anyone will admit it. If I saw bruising on my baby I would want answers not just oh that's normal.

Thank you Jess for your strength in making your story about your son's Hemophilia public - I never realised that it was still occurring (can only remember it mentioned with Queen Victoria & the last Romanov prince); hopefully the treatments can be successful for your precious one x

YOU are A GIFT to MILLIONS, JESS! I AM SURE that you are helping so many to understand, Helping parents to look at a BRIGHTER side, AND, ALWAYS, to seek ANOTHER Physician When your ❤ tells you to. I will continue to watch! GRATEFUL THANKS! ❤

God bless you and your family.

Prayers for you and your family especially you son❤