Family works to raise awareness of rare Sanfilippo syndrome after son's diagnosis

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  • Опубліковано 26 гру 2024

КОМЕНТАРІ • 26

  • @saintlitt7297
    @saintlitt7297 11 місяців тому +8

    all my love goes to this family. I pray he gets better. MY GOD BLESS HIM BLESS THIS CHILD BLESS HIS PARENTS AND TWIN BROTHER

  • @christinetaggart2489
    @christinetaggart2489 Рік тому +12

    All my love goes out to all the parents and there courageous beautiful children.

  • @chantalsscaleisafibber
    @chantalsscaleisafibber Місяць тому +1

    A mom generally knows that their child has a problem and often has to sadly demand the tests needed to confirm their child has something that's wrong with their child.

  • @Poloprods
    @Poloprods 4 місяці тому +3

    Dude her crying makes me cry and I’m scared for my brother

  • @knuffelmaus7175
    @knuffelmaus7175 Рік тому +7

    So sad, I hope research improves, and that they can enjoy as many years as much as possible

    • @Jesus_equals_LOVEnForgviness
      @Jesus_equals_LOVEnForgviness 2 місяці тому

      I do too. I remember when my cousin was born with cystic fibrosis. His life expectancy was 11-13. Then they found new treatments and it changed to early twenties. Then there were more breakthroughs. He's now 37, and with current treatments he should have a long life. And I pray more miracles happen. For this family too.

  • @rosah.901
    @rosah.901 2 місяці тому

    Sending prayers and love to this little boy and his family. Prayers for treatment and a cure

  • @MariaGonzalez-mn8gk
    @MariaGonzalez-mn8gk Рік тому +3

    Dios les bendiga a esta y muchas familias que estamos viviendo en este mundo con un niño especial.

  • @ag5amanda
    @ag5amanda 2 роки тому +16

    I just don’t understand why they didn’t do genetic testing from the beginning. Doctors like to go around and around about things sometimes. As a mom I have learned to push hard on my daughters doctors whenever I notice something not right, I know they don’t like it but I have to advocate for her.

    • @chanabayla1823
      @chanabayla1823 Рік тому +1

      Many parents too can be tested to see if they're carriers for things and choose not to which to me makes them murderers. And not all states do complete child screening but as a potential parent, u need to think like one before your kid is born so u do what u need to do regardless of inconvenience or money to take care of your child

    • @megsley
      @megsley Рік тому +3

      genetic testing is EXPENSIVE. you sound like the kind of person who would demand everyone get PET scans once a month to check for cancer.

    • @shenbas7306
      @shenbas7306 Рік тому

      You are right but we are aware of this kind problems we only know about brain development is normal we continue that baby.not only us but the doctors also don't aware of this we going for all the best hospitals in our city they all say it's a autism,adhd,delay development.and they blame the mother's you are not caring your kid,you give mobile to your kid.thats why this happened.i just shout at to them iam not allowing mobile phone to my girl.they all said the same things.still they are not aware about this disease.you are such a intelligent mom i accept.but don't stop your intelligent with your kids.if you have the time you just give awareness to rest of the world.please don't say like this kind of words .we are already in pain.we are not know this happened to our kids.

    • @volz519
      @volz519 11 місяців тому +2

      a jscreen test is only around $200 @@megsley

    • @papoochacoo
      @papoochacoo 11 місяців тому

      Thank you, @volz519. Reproductive genetic test is sometimes covered by insurance, also. Great website. Thank you, again 💙🙏💙

  • @kardaine29
    @kardaine29 Рік тому +8

    Instead of funding wars America should be funding research into saving our babies... if we can split the atom what else can we actually do and how much is hidden behind the curtain of greed

  • @shenbas7306
    @shenbas7306 Рік тому +2

    Hii parents.i am from india.my daughter affected this deadly disease.i never hear this type of disease before.i don't want lose my girl .can you please tell me any research is going under this disease.

    • @beth6288
      @beth6288 11 місяців тому

      It needs funding for research ,etc...

    • @Poloprods
      @Poloprods 4 місяці тому

      @@beth6288fr

  • @KARMAISABITCHouch
    @KARMAISABITCHouch Рік тому

    Best thing is to have GMO kids, the embryo is tested before this whole mess and only develop the perfect ones

    • @ceeceebb
      @ceeceebb Рік тому

      Stupidest comment I’ve ever read. There’s no such thing as a perfect child and things can happen to anyone at any time. If you want a perfect child, do yourself a favor and don’t ever even think of having children.

    • @maxresdefault985
      @maxresdefault985 5 місяців тому

      @@ceeceebbshut up or scroll somewhere else

  • @Jesus_equals_LOVEnForgviness
    @Jesus_equals_LOVEnForgviness 2 місяці тому

    God bless him and his family