Terrified Parent... My three year old daughter just diagnosed with Muscular Dystrophy

Ems

My three year old daughter Nora was diagnosed with Muscular Dystrophy on Friday, having lost much of the function in her legs over the past three weeks. I am devastated, and don’t think I can cope with being the parent of a child with a disability. I love Nora more than anything but right now I am struggling to see any of the positives or to find hope. I am hoping that someone on here can reassure me xx

Ami2301

Hi @Ems welcome to the community!

So sorry to hear this, understand that this is an upsetting time for you. Please do not feel guilty for how you are feeling. It is overwhelming coming to terms with your child's condition.

Firstly, take deep breaths. Scope can help you find support and information that you need. 

Has her consultant provided you with any information or support?

thespiceman

Hello @Ems Pleased to meet you welcome.

Sorry to hear this about your daughter.  I hope we can as a community help and advise.

You need some reassurance. May I suggest speak to the Muscular Dystrophy UK.

https://wwwmusculardystrophyuk.org.

Helpline 020 7803 4800

Email info@musculardystrophyuk.org.

Hope that helps.  We are a friendly, supportive community.

Please ask if we can advise on anything. Some one in our team or a member of our community will be in touch.

Please take care.

@thespiceman

Sam_Alumni

Hi @ems

Welcome to the community, I am sorry to hear that you are feeling quite so overwhelmed right now.  Many parents have been in the same position as you and understand just how scary it is to get a diagnosis for your child that you werent expecting.

Im so glad you have joined us here on the community and I hope we can help, do join in and chat with other parents and members, lots of people do feel it helps to talk to people in a similar situation to themselves.

We have a few videos by parents about how it feels to get a new diagnosis for your child, I wonder if they might help you?

https://www.youtube.com/watch?v=bSpkYnOMe8k&feature=youtu.be

https://www.youtube.com/watch?v=glACggVD_kM&feature=youtu.be

https://www.youtube.com/watch?v=DXix-yi1uAU&feature=youtu.be

https://www.youtube.com/watch?v=6T6-346O0hw&feature=youtu.be

Ems

Thank you, these are really helpful to watch when I am having a tough time x

Doris_Scope

Hi

@Ems

.  I am a parent advisor for Scope for a service that is starting on Monday (25th Feb 2019) called Navigate.  I was wondering if you had found any answers or were still looking for support. 

We are a service for parents who have recently had a child diagnosed with a disability or impairment or going through diagnosis. This support is over a period of six weeks and we are there to support the parent with any emotional issues or practical support that we can offer. As of Monday, we will have a link to a referral form and also a telephone number for you to contact. 

I will check this link on Monday when the service starts and if you would like to contact us, I will post the phone number and a link to the online referral form.

I hope that we can support you.

Doris_Scope

http://www.scope.org.uk/navigate

Adam_Alumni

Hi @Ems

Navigate is Scope's new parent mentoring service  that provides emotional support for parents of disabled children, it is for parents in England or Wales who have a child who is either going through or has received a diagnosis in the last year.

Is this of interest to you?

Take care.