Previous post:

UPDATE 22/10/2020:

Hey everyone just a little update on how our little Halle has been doing, she is such an inspirational strong little girl who is always smiling and soldering on with many hiccups and medication to keep up with. Halle has now had her MRI scan results which were delayed due to covid; unfortunately the doctors have noticed a few more problems occurring. More of Halle's brain hormones have gone/significantly reduced.

Halle’s full diagnosis is currently:

1. Septo optic Dysplasia

2. Optic nerve dysplasia

3. Diabetes Insipidus

4. Adrenal insufficiency

5. Hypothyroidism

6. Anaemia

7. High calcium problem

8. Abnormal bone profile

9. Complete loss of smell hormone

10. Partial developmental hormone

11. Partial seizure hormone

12. Partial hunger hormone

13.Nodule lump in neck

Our Little princess is still attending many appointments to make sure all of her medication is under control and that she is feeling well, as Halle can have sudden change where she can get very poorly very quickly. As blind babies take a lot longer with development Halle sees a physiotherapist and now has a standing frame to which will help build her confidence and strengthen her muscles as you can imagine its very scary for her to try new positions so it's a slow process but she will get there 💪. She is attending a weekly music class which she absolutely loves, she also goes to baby groups that specialise in children with needs, sadly due to lockdown these classes are not always open but we hope it can go back to normal soon so Halle can keep up all her classes and finally start her swimming! She continues to amaze and inspire us on a daily basis. ❤️❤️

Our darling baby Halle was born on the 13th August 2019 with several life long illnesses -

Diabetes insipidus, adrenal insufficiency, abnormal bone profile, thyroid and anemia deficiency and a heart murmur.

Here is a link that explains a bit more about Halle's illnesses -

https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/septo-optic-dysplasia

Halle‘s brain hasn’t developed as it should which is causing these problems. Halle is having another MRI scan next month because things can change and more problems can occur, we pray this wont happen.

When we as a family thought it could not get any worse we had the devastating news that Halle is totally blind in both eyes. For Halle to deal with these conditions whilst being blind is heartbreaking.

It has been so heartbreaking for us all, especially Lee, vicky and big brother Clay. They are not receiving any disability or government funding. So our aim is to help them all and to provide Halle with a fully equipped sensory room and adapt their home for Halle’s needs.

Halle currently attends hospital appointments 4-5 times a week. We would also like to help buy them some hospital medical equipment to be at home with them.

We have arranged a fundraising event on Saturday 9th May 3pm, we will be selling tickets for this event soon and we hope to give you all a great family day/night of entertainment/raffles/auctions/surprise guests and performances. We can only invite you all to help hopefully raise the much needed funds to help our special beautiful Halle. In the meantime this money will go to anything that Halle needs to help her. Thank you xxx