We finally were able to get Summer her very own new lazy boy chair. We wouldn’t of been able to do this without your generous donations. Thank you 🦄💗
Lovely for her to relax in!
Summer now has a new bedroom which has all the equipment she needs hospital bed hoist etc. We want this room to be Summer unicorns rainbows and photos of all her special people. We haven’t finished yet but here’s a sneak peak. We wouldn’t of been able to do this without your donations thank you every single one of you 🦄💗
Gorgeous!
It all started on Thursday the 7th of august with a follow up appointment with Sumz head starship doctor we were apologised to that Summer has been neglected by the health system for the last 4 years then told it was disgusting how neglected Sumz has been by her medical team. Summer was admitted to do the tests that she should of had when we were showing concern. 27 head doctors say they feel responsible for Summers neglect so many referrals had been filed as non urgent one major concern we’ve had for Summer for over 7 months now was her swallowing they told us that it was at least 6 months wait as it was marked non urgent Well it was urgent our baby is swallowing liquid and food straight to her lungs and there is nothing we can do about it Summer will also not have a voice for much longer. We are sorry if you have messaged and we haven’t got back to you we have so much to process as our beautiful princess is progressing very fast now the one thing we can’t stop thinking about is the palliative meeting don’t wish that type of meeting on any parent it’s a sick feeling knowing your baby is dying and there is absolutely nothing we can do but watch we will never stop advocating for you our beautiful princess you do matter and we are sorry that you haven’t been cared for by the health system after we were telling them we had concerns Summer after all has a rare form of a rare disease only one ever in nz
I am so sorry to hear this. My heart is with you at this time—prayers and thoughts for the beautiful summer. xx
Summers legs have been giving her a lot of grief lately she is walking less and less and Sumz is struggling to move them 😖💔 even though Sumz is being an absolute trooper we know it’s not long until Batten has taken her ability to walk away 😭
First day of school holidays today and Batten is being horrid Miss Summer is feeling miserable with a pounding headache and legs not wanting to work
Summers medications 💊 sorted for 3 weeks. Pain meds given as needed. Breaks our hearts to see our princess on so much different medication. Bravest princess we know
You will never see Summer without a reborn she says they are her everything. We are sure you will get to know them all on here. Summer you are such a good Mummy to your babies 🦄💗 This is baby Grace 💗
