I’ve wrote about Poppy our eldest child before .
This blog is essentially about her too. When you have a child with special needs, a condition, a syndrome or an illness it can turn your life upside down.
Rob and I knew no different, Poppy was our first and what we thought “difficult” baby.
When I look at how our life has turned out we are better people because of her. We are a strong family unit, as a couple we have worked through difficult times and decisions. We are raising two other little humans that are incredibly open minded, show amazing awareness, they are compassionate, caring and sympathetic because of their sister and the role they play in her life.
The repercussions of having a child with special needs goes further than just our house. A family member wrote this for me, so you can read someone’s opinion other than mine!
We all want our children to be ok. When you realise that things are not as you thought, your life is turned upside down. Anger, guilt, despair. Rob and Michaela have been fantastic going on to create a wonderful family and have made sure Poppy is involved in everything. Poppy is very special, she remembers people, the whole family only get together occasionally and she has always been very excited to see us all. She is very sensitive, caring and loving. She sometimes has a meltdown for no real reason that we can see, but sometimes her frustration is about us not understanding her communication. I find that distracting her from the meltdown is often the best thing but sometimes you just have to ride the waves. Although she cannot always communicate with us properly, she totally understands what we say to her. When Poppy was diagnosed with Jordan’s syndrome it was a relief to finally put a name to the problem. However, because it is a very rare genetic disorder, we don’t really know what the future holds. Because of Poppy I am more accepting and give much more time to people with special needs. I realise we are all too busy getting on with our lives that we don’t always see what extra time people like Poppy need. We love her and treasure her.
We were given Poppy for a reason. We now need to raise awareness about her and her friends, our PPP2R5D family.
So a little history before I go into the fundraising details… I stumbled across a facebook page around 2 years ago when I’d googled (Again!) to find some information on Poppy’s gene mutation.
The page was titled PPP2R5D Families.
Simply, a page of families that also had children with Poppy’s genetic condition. I was so excited to find the page I called Rob and we both joined the group straight away.
Fast forward and we have got so much from that group. Seeing and reading about the other children, all their similarities and their achievements.
We are so looking forward to meeting the majority of the 72 families in San Francisco March 2019 at the 2nd family medical conference!
The conference is being arranged by Jordans Guardian Angels (JGA) The charity set up by Joseph Lang in honor of his daughter Jordan, one of the 1st children to be identified as having gene mutation PPP2R5D.
Finally meeting all of these children that we have watched grow over the last 2 years will be an amazing experience! Being able to see them all together is so exciting!
We are being given the opportunity to talk and bond with parents in our situation and for Izzy & Leo they get to meet other siblings with a sister or brother just like their Poppy. This is an invaluable experience for us and all the other families.
Whilst we are at the conference we will learn about the research that is underway to try and find a cure for this gene mutation. Poppy will have the opportunity to give samples to be used as part of this research. Imagine being 9 years old and helping to potentially cure not only her gene mutation but also some forms of cancer and Alzheimer’s!
We are so grateful that the charity are paying for families to fly from around the world and providing us with accommodation for 3 nights to attend.
Now JGA have been doing an amazing job of finding grants and funding to start their medical research but the money will go quickly. We want to repay their kindness and raise the funds back for our flights.
Hence our fundraising efforts! Rob completed an obstacle run at the beginning of November with a friend on behalf of JGA. So far a total of around $1600 has been raised with some match funding from Deutsche Bank!!
Next up a little party with Poppy as the VIP guest. I decided to do an event in Nocatee since Poppy is pretty popular round here! This event will be a fun few hours for friends to have a few drinks, sample some food, hopefully win a raffle prize and bid on our silent auction items. All the items we are giving away have been donated after a simple post on a local facebook page – our community has been amazingly generous!
What feels more important to me about the event though is the information and the awareness that people will leave with. Poppy has an extremely rare and some what invisible condition. Unless people ask, they don’t know the details. So we will inform our community about Jordans Syndrome, about the gene Ppp2r5d and the research being conducted.