One of the interesting things to come out of the current Covid-19 crisis is people being surprised to hear that they are considered ‘vulnerable’. They may be over 70, have an underlying condition or a disability. ‘Vulnerable’ is not a word that they would choose to describe themselves and they don’t feel they belong in this group but nonetheless their age or condition means they are classified as such.

Within the Down’s Syndrome community, just as in wider society, there are people with wide ranging abilities and a wide range of health issues too. Some parents of children who were born early, required heart surgery or have had treatment for leukaemia for example, understand what being vulnerable means and have previously shielded them from all sorts of bugs and viruses. For them Covid-19 has awakened past anxieties where they remember just how vulnerable their children have been. For others whose children have had less health issues, they are now faced with the worry of whether having Down’s Syndrome makes them more vulnerable and perhaps thinking about their child’s health needs for the first time. This week’s blog is written by friends Nicola and Jess whose children have different health needs and whose lives have been impacted by Covid-19 in different ways. Covid-19 has challenged Jess to think about her daughter’s health in a way she hasn’t had to before

Here at DSRF we support research into conditions that can effect those with Down Syndrome because we believe it simply is not satisfactory that we are told these situations ‘are normal for Down’s syndrome’ and are ignored. Much of mainstream medicine are not listening to the experience of parents and telling us our opinion is not valid, only research is.  As long as we still lack research on foundational aspects of Down’s syndrome we are told ‘it’s normal for Down’s syndrome’ or to calm down.   The only way to rectify this is to support us and make research into Down’s syndrome a priority, NOW.

Maybe you can support us financially or by fundraising. You can also spread the word that things need to change and the time for a focus on research is NOW.

 

Nicola and Lily

When I opened the text saying Lily had been identified as extremely high risk to Coved-19 I felt sick. Although I knew we would likely be getting the text and letter when I received it, I felt my stomach turn. When Lily was born with two cardiac conditions and other complications I had to shield her to protect her life. I made my family wash their hands before holding her and didn’t go out to public places. Unfortunately this wasn’t enough and we almost lost Lily due to influenza. Thankfully we have managed to live pretty normal lives the last 3.5years enjoying a social life, nursery and normal every day activities.  Fast forward 4 years to receiving the text and letter from the NHS and I went straight back to the mum that had to protect my child at all costs. I went straight Into fight mode. We are a family of four and are not able to leave the house at all, not for daily exercise or shopping but we are coping ok. I have always aired on the side of caution and don’t go places where I know another child has been poorly or has a cold. We avoid softplays! So although not leaving home is hard it’s ok. We are really struggling with not seeing my family and close friends as we usually see them so often. Lily has been asking for family members, her teachers and friends. She doesn’t understand why we can’t go out, why she can’t cuddle nanny or see her cousins. The last two weeks Lily has started waking up upset almost hourly. We can only assume this is due to the huge change in routine and being in isolation. We have received support from the government by having a weekly Asda delivery slot so we don’t have to rely on family to shop for us. They also send us a weekly care package of food. Lily’s nursery have daily contact with us and send Lily work. They offer us all support and are an incredible SEN setting. Its hard, I as a mum sometimes feel a little isolated having a child with down syndrome in “normal” life but in this new life where Covid 19 exists I feel more isolated than ever before. This time I can’t have a hug from my mum to tell me it will all be ok. Instead I hug my daughter and hope everything will be ok.

Jess and Pippa

Our daughter is 4 years old. We found out that she has Down’s syndrome at birth.  She came two weeks early, but we were fortunate that she was generally healthy and did not require extra medical support at the time of her birth.  She has recurrent chest infections, was diagnosed with a very mild PDA and later developed visual and hearing impairments and sleep apnoea. These do not stop her from being active and she continues to develop and at her own pace.  We know that there are challenges and we are prepared to do everything to overcome these.

Covid-19, however, is a challenge that we haven’t prepared for.  As she has not had major health problems, we have taken for granted how her existing medical problems could potentially affect her health and ability to live if she contracts the virus. For the first time, we had to think hard about our daughter’s health needs and what catching the virus meant for her.  This scared us a lot.

I work for the NHS and could be redeployed to the frontline, which means that I still risk exposing myself and in turn, my daughter (and family).  I value my work and the people I look after.  But my daughter comes first.  We are very fortunate to have friends in our local Down’s syndrome support group who give advice, comfort and reassurance to help me think in more practical terms so I could take further steps to try to protect my daughter.

UK Covid-19 and Down’s syndrome survey

There is still time to complete the survey we are running with Positive About Down Syndrome to try to reach as many UK based families to collect data to establish some baseline findings:

How many people with DS in the UK have had a confirmed case of Covid19 and how many suspected?
How has it affected those people, what treatment did they require and how did they respond?
Is it possible many are not showing symptoms, much like neuro-typical children/adults?

We would like all people with DS in the UK represented, Covid19 symptoms or not.

Please complete the survey by 5th May.
https://www.surveymonkey.co.uk/r/28TDZCN