Wear yellow today and show your support! Using the tag #howbigbws across social media. Here is why it is so important to raise as much awareness as possible:
If you’d like to find out more, please visit Howbigbws.com
Penelope was born in June 2014 and after a very rocky start (needing ECMO treatment to save her life) we soon learnt that she had a rare disease called hyperinsulinism. This is essentially the opposite of diabetes whereby too MUCH insulin is produced causing potentially fatal low blood sugar. She began medication and responded extremely well, however some months later when the genetic cause of her Hyperinsulism was being investigated it transpired that it was the result of ANOTHER rare disease- Beckwith Weidemann syndrome. This is an overgrowth disorder with a myriad of symptoms affecting each individual differently. In Penelope’s case her pancreas was enlarged and thus secreted too much insulin causing hyperinsulinism and low blood sugar. But, the main worry attached to BWS is an increased risk of childhood cancer for which she receives regular screening and blood tests. We feel very lucky everyday for getting the diagnoses of her rare diseases relatively fast as it means she now gets the care she’ll need, until the age of 8 when fortunately the chances diminish. Luckily there is a great support network of parents on hand from around the world who help each other out with advice and such like. I try to raise awareness for these rare diseases as I know that getting a diagnosis isn’t always as straightforward as it was for us but can save lives in some cases!
Yay! Lots happening for Penelope and Friends. As well as working with the lovely lady from @bitsandbows2 (check her out on Instagram by the way, she sells lovely baby accessories); I have also set up another account called @penelopes_preloved. I’m currently going through clothes that are unfortunately too small and some that she only ever wore once or twice because she is so fast at growing! Once that’s underway I am putting all proceeds into making more NICU bags!
It’s also Rare Disease Day at the end of the month so I’ve been sharing Penelope’s Hyperinsulism story which will also raise awareness and I’m working on ideas with some lovely BWS mums too. Keep your eyes peeled!
Been quiet on the blogging front enjoying Christmas and New Year with the little ones and getting my Penelope and Friends NICU bags completed and handed out as well as trying to organise an event to start raising money for the next batch! Been a busy lady. On top of that I am attempting to learn to knit to make bonding squares for the bags, Laurence is teething and Penelope is a regular toddler tornado!
I am hoping to have the next lot out in February and hoping the first batch were handy to those that received them.
Entering NICU for the first time in a long time was very emotional and brought lots of memories back, both happy and sad. It was so hard to see the little babies that would be spending their first Christmas there, but completely inspiring to see the strength of the parents devoting themselves entirely to their tiny newborns. I slipped in some extra treats in the bags, in the form of selection boxes so the mums and dads could have a little something sugary to keep them going.
I have been putting collaborative plans in place with a lovely lady on Instagram who is interested in our NICU bags and I can’t wait to reveal that soon 😘 If you’re on Instagram have a look for @bitsandbows2
Big plans for BWS awareness day in a few months are also in the pipe line and we have big decisions to make this year with regards to Penelope potentially needing two different surgical procedures and another trip to Great Ormond Street.
I think 2016 will have some ups and downs but I’m ready to face it head on and excited about all the good things to come!
Hope everyone is enjoying the new year so far 😘
That’s an entire year of six weekly blood tests and twelve weekly ultrasounds done! Last ones this week came back fine. Massive phew and now we can begin to enjoy the Christmas period, finally! I said to Penelope she could have an early Christmas present for being so brave but all she wanted was my necklace. So, G is now for Penelope!
Only five and a half years left. 😢
For more information on Beckwith Weidemann please visit http://www.howbigbws.com
When I was born I had a seizure. My eyes were going back and forth, I was eating my Cheerios, I couldn’t find them. I couldn’t see my mum either. I was brought to the hospital, the doctors said I was having a seizure.
As I grew up I kept having the seizures and bad temper tantrums. My mum didn’t know why. She called every doctor but they did not find her (answers).
I grew up even more, I got medicine that would make me grow hair everywhere. I have thick hair and little hairs on my arms and legs. I always feel embarrassed when people ask me why, it’s not normal.
I had some problems with my body, I had to go through terrible stuff but my problem has given me a special title that I love.
This had me completely in tears. I’ve only ever known hyperinsulinism from an adult point of view and never truly considered the impact it has on children, as Penelope is only 17months. How amazing are these kids?!
To learn more about HI, please visit: http://congenitalhi.org/congenital-hyperinsulinism/
Well it would seem that November is the Awareness Month. So I am compiling all that are important to me in this one post.
Firstly it is Persistent Pulmonary Hypertension Awareness month. This, along with meconium aspiration, is the reason that Penelope needed her lifesaving ECMO treatment. http://pulmonaryhypertensionnews.com/pulmonary-hypertension-newborns/
There is also World Diabetes Day in November. Even though Penelope has the opposite of diabetes I am always drawn to anything to do with blood sugars as they have hypoglycaemia in common and know fully the daily worry that comes with it and glucometers, even from the opposite end of the spectrum. Many babies who have hyperinsulinism do go on to require a full pancreatectomy in order to “cure” their persistent and fatal hypoglycaemia and as a result end up with type one diabetes. So I do believe there is a cross over and I will be doing fundraising for diabetes in the future as I am a firm believer that if a cure for diabetes can be found, a cure for HI will shortly follow. http://www.diabetes.co.uk/World-Diabetes-Day.html
November also sees World Prematurity Day. Penelope and I will be wearing our favourite purple tee shirts it. Penelope’s NICU “room mate” Mylo of Mylo and Friends was born 10 weeks early and we followed behind him in each NICU room until finally “graduating” from NICU in the same week. His mum has gone on to do fantastic work for our local NICU and I am following suit. Find out more here: http://www.bliss.org.uk/world-prematurity-day-2015
Also linked to Hyperinsulinism and Beckwith Weidemann syndrome is Pancreatic Cancer Awareness month. Obviously it is the pancreas that is affected with hyperinsulinism causing the overproduction of insulin to be secreted. This can be down to a tumor on the pancreas. In BWS, kids are more likely to develop childhood cancer, namely kidney (Wilms), liver and pancreatic. So this is another awareness campaign close to my heart. http://www.pancreaticcancer.org.uk/campaigning-and-volunteering/get-involved