Please Help Save Batya
Please help save Batya Hanna's Life..
Batya was born on the 3rd January this year suffering from an incredibly rare illness called Pfeiffer Syndrome and Antley Bixler Syndrome.
Batya has spent the first 3 months of her life in intensive care and is now at home and being cared for by her parents Naffi and Racheli Goldman.
Batya suffers from holocelanopholy (water on the brain) with a malformed skull and spinabifida;
Batya is deaf and blind and her eyes have had to be partially stitched closed; her lungs do not function too well. As a result, Batya is fully ventilated through a tracheotomy to help her breathe.
Since Batya was born she has fought tooth and nail for life…. She has been resuscitated 6 times up until now refusing to give up her precious life.
But all is not dark….. Batya smiles the most beautiful smile you have ever seen… she clings so tightly to your finger with her tiny hand… and when she is held, she has the most content look on her face…she loves to be stroked gently… and somehow she knows when your there….
The doctors have said there is nothing much that they can do for her… so we have her at home and take care of her and love her around the clock. We are not so quick to give up on her…
We urgently need to have life saving surgery for her. We have had MRI's done and many other tests, but up until now the priority has really been keeping Batya alive and stable.
It's pretty stressful and relentless having a fully ventilated 9 month old baby in a home environment, but it is possible. Batya needs 24 hour full time care and monitoring, my husband and I are doing 12 hour shifts around the clock… we could really use some help…
On a daily basis we are constantly fighting to keep Batyas' oxygen saturation level at the correct levels (making sure she has enough oxygen in her blood to feed the vital organs) and having to perform sterile suction every 2 - 3 hours to prevent her airways from becoming blocked.
We desperately need some specialized equipment to assist in her care, make her more comfortable and try to prevent future issues like bed sores; including a specialized bed, a specialized mattress, air cooling units, closed suction catheters, mobile ventilator, a specialized buggy to be able to move her to name but a few items.. We could also really use some professional assistance so that once in a while we can take a break knowing that somebody competent is looking after Batya. All these things are really expensive and our savings have just about depleted…
My husband has had to give up his job running a shop to be able to assist with looking after our daughter.
Naffi Goldman (42) from Manchester UK married Racheli (34) in 2016 and lived happily together in Manchester where Naffi worked in jewellery sales. In March 2017 Racheli fell pregnant to the great happiness of the couple.
On the 3rd of Jan this year Batya was born.
Batya was rushed to intensive care to stabilize her situation and to try to understand what was wrong with her .
The medical team could tell immediately that Batya was not like other children. Her head was unusually shaped and long, and her eyes were protruding to name some of the more prominent features immediately noticeable.
Over the next 3 months in intensive care, Batya battled to stay alive against all the odds. Doctors and experts incessantly told us Batya wouldn’t survive…..
A couple of months ago Batya being relatively stable was released to home care.
Naffi and I believe that she deserves love like any other child, she deserves to be held and stroked, loved and gently cared for…we believe that Batya is a fighter… the task is mammoth and relentless (80+ procedures every 24 hours)… but we are sure that what we are doing is based on kindness and love… and that truly the best environment for Batya is her home with her 2 loving parents giving her the required care, attention and love.
We desperately need financial help to allow this to happen….
We have undergone intensive training by the hospital to give us the necessary tools to be able to take care of her.. Including injecting her with necessary medications, performing sterile suctions, life support and resuscitation, feeding and giving medicines via her peg, mechanical ventilation support and many other critically important procedures that she requires. She is visited weekly by a specialist pediatric doctor.
Please help us to keep Batya alive and cared for… we are grateful for anything that you can give…and may G-d bless all who give with a good heart.
If you would be kind enough to donate, we can only offer our prayers, love and thanks......
Click on the DONATE HERE button to go to our GoFundMe page... thank you so much...