Melissa
Region: US
Saturday 26 September 2026 14:04:17 GMT
11437
717
36
9
Music
Download
Comments
YaYaAtonya :
Praying for your family and Precious Owen. My granddaughter has the same thing. You are my daughter are super moms 💜💜💜!!!!! Imogen is a month younger than your Owen. Sweet babies
2026-10-22 18:40:46
0
HopeInTexas :
I’m bringing your story to my prayer group tomorrow. We will be praying for Owen and for you, your husband and Owen’s medical team. Please keep updating. I hope you find answers way to make him comfortable so that your mom heart can get some much needed rest. 🙏🏻❤️
2026-09-29 09:23:12
8
Mindy Payne Silipo :
Praying for you and your family. This is devastating news for any mother to receive. Bless his little heart. Stay strong momma! 💕💕
2026-09-27 02:25:25
2
Well Hello There :
I'm sorry you are going through this and sending my best wishes for your family. I did a tiny bit of research, and I will post it here, but it is only in an effort to help in some way. I know with myself that it helps me feel in control, the more educated that I am and so you have more ammo to advocate for your family and your son when the need arises because doctors aren't perfect, they are human beings too, and fallible. And it sounds like you understand that: Because KCNT1 mutations typically present in the first few months of life (as seen in Epilepsy of Infancy with Migrating Focal Seizures, or EIMFS), standard treatment protocols are explicitly geared toward infants.Most of the standard medical and dietary options are appropriate for an infant under a doctor's supervision, while advanced surgical devices or specific trial phases are typically restricted by age.1. Traditional Anti-Seizure Medications (ASMs) – YesTraditional medications are routinely prescribed to infants with KCNT1 mutations. Doctors often try several options in combination to manage the heavy seizure burden.Phenobarbital: A standard, trusted baseline medication widely used in neonatal and early infantile intensive care settings.Levetiracetam (Keppra), Clobazam, and Topiramate: These are routinely prescribed to infants and are available in liquid or dissolvable formats.Vigabatrin: Frequently prescribed to infants if the KCNT1 mutation causes a specific seizure type called infantile spasms.
2026-09-26 21:15:54
0
Canadiangirlie🇨🇦 :
I am so very sorry you are going through this. You are not rambling. You are a very good story teller. I just wish this didn’t have to be your story 😞
2026-09-26 23:45:06
3
KJ :
Hugs momma ♥️
2026-10-18 05:40:13
0
Allison :
I’m so sorry, you’re such an incredible Momma 🥹💜
2026-10-02 02:24:01
1
Mary González :
Does this video have no Spanish subtitles?
2026-09-26 16:50:35
2
sassymumma :
Oh mumma! I am so very sorry precious Owen has been through so much in his young life. I cannot begin to imagine the heartache you and your family are going through trying to navigate such devastating diagnosis. Please know, a stranger from the other side of the world is praying for you all and sending you all the love I possibly can. Choosing to share your story to help other little ones is beyond brave and I hope that you will be surrounded and held by your online village. May God bless you and comfort you during this time. ♥️🙏♥️
2026-09-28 14:53:28
1
Sherbear :
I’m so sorry 😢. I will be praying for you and your family.
2026-10-02 03:48:58
1
Melinda H. :
You are an incredibly strong human. I want to thank you for your courage. It must be so hard to understand why this is happening. All I can say is that God will give you and your family the strength to continue with his plan. I feel that what nobody talks about is the trauma as a parent experiences. Give yourself grace, breath, feel your emotions. But above all try not to fix just live and enjoy the moments and the time your angel has on this earth. Stay strong, and thank you for the awareness!
2026-10-01 06:46:56
2
ConcretRose_247 :
God bless you and your family. I pray for strength and tenacity for you and your family.
2026-09-29 06:03:00
2
Diana :
So sorry for all the heartache your going through I’m sending prayers bid hugs for you and your husband no parents should have to go through so much pain 🥺
2026-10-13 05:15:24
1
I'mBoomerOld :
love and peace to you all 🤗
2026-09-30 03:38:12
1
kerriganpurslow :
Sending love from the Purslow gang ❤️❤️❤️
2026-09-27 02:17:42
1
Kate :
hugs to you mama 💖 and hugs to baby Owen
2026-09-29 04:09:55
1
Stephanie Forman :
Thank you for sharing your story, I am sending strength to you all and to baby Owen as you continue to navigate this journey. 🙏
2026-09-27 05:43:16
1
Alpine :
I am so sorry. ♥️
2026-09-26 20:33:27
1
mommaval❌ :
I had a very similar story with my middle daughter. She was diagnosed at 2 months old with a rare brain disorder called Lissencephaly. At the time 4-500 cases in the US. Apnea seizures, all kinds of seizures. Tests.. when we got the diagnosis, the doctor said most kids don’t live past 2-4 yrs old. I was in shock. No reaction.. Dr said ma’am do you understand what I’m saying? Yes… well I’m here to tell you that my beautiful girl celebrated her 27th birthday in June! Drs don’t know everything!! ❤️
2026-10-02 02:25:58
1
kobrien2016 :
🥰🥰🥰
2026-09-27 01:48:24
2
MZPURDY :
💔💔💔
2026-09-29 18:10:08
0
Jody2500 :
🥰🥰🥰
2026-10-04 03:29:07
0
Diana :
🙏🏻🙏🏻🙏🏻
2026-10-13 05:12:29
0
Enigma :
♥️
2026-10-21 17:49:26
0
To see more videos from user @melidanielli, please go to the Tikwm
homepage.
