Hurler syndrome

Oh, . That is a tough diagnosis and I am so sorry your granddaughter, your daughter, and you find yourselves on a path you never wanted to be on. Please know you can come here anytime you need to vent.

That said, you are a Mom and I know you can do this. I know you have the strength to support your daughter during this very hard time. I know you can because us Moms do hard things all of the time. Please take the time to grieve and maybe even talk to a therapist about how you are feeling. This is pretty devastating news and it's okay to need time to process it. A professional may be able to help you be as strong as possible for your daughter and granddaughter.

Again, please come here anytime you need to cry or get some support. And just keep loving on your daughter and granddaughter as you have been doing all their lives. They need you now.

I am so sorry you are in this position and I hope you find others who can relate to what you are going through. There are organizations for people living with Hurler -- https://mpssociety.org/. Also, here is a support group for parents and legal guardians of children with Hurler -- https://www.facebook.com/groups/548777808558580/. And, this group may have support options -- https://rarediseases.org/organizations/national-mps-society/. Sometimes being around people who "get it" can be such a comfort.

I am so glad you reached out here. And I am sorry your heart is breaking right now. You sound like a loving, empathetic mom and grandma.

You and your family are in our thoughts. Keep us posted on how you are doing, if you feel comfortable doing so.


Gentle Hugs, Erin, Team Member.

(((Hugs))) . It is difficult knowing that your child will have struggles that are out of the ordinary.

Please know that this community is here to support you. Have her doctors been able to answer all of your questions? Have you been able to connect with local support? - Warmly, Donna (Team Member)