Please help us care for and save Batya Hanna's Life..
Batya was born on the 3rd January 2018 suffering from an incredibly rare syndrome called Pfeiffer Syndrome, together with another syndrome called Antley Bixler Syndrome. There have only ever been about 35 reported cases of this syndrome since 1975.
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 in her sleep… 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…
Up until now the priority has really been keeping Batya alive and stable.
It's very stressful and relentless having a fully ventilated 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 – I do midday to midnight.. and Naffi does midnight to midday….… 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 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 need urgent life saving surgery in the USA for her….she really needs a baha band to help her to hear…..On a totally different note….. 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 – The person looking after her really needs to be an paediatric intensive care nurse or a doctor – They must be able to perform immediate life support . All these things are really expensive and our savings have just about depleted… We are desperately trying to do our best for Batya… We believe in life and love……
My husband has had to give up his job running a shop to be able to assist with looking after our daughter.
Naffi (Naphtali) 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.
In week 32…. 8 weeks pre full term…..Racheli underwent a scan. …. Our first inkling that something was wrong was at this time. The doctor dropped the bombshell…he thought our baby was going to be born very sick…. He advised us to abort her…..
We decided that we were prolife and were going to prove it and live by this ethos…. We believe that everything that GOD does is righteous and perfect, that GOD does not make mistakes..….and we would look after this gift with all our heart and soul…. We would try our best to make her as comfortable and loved and try to give her the best in life……we knew that it was going to be a serious challenge…
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…..
After 3 months of fighting for her life…..Batya being relatively stable was released to home care. Fully ventilated and requiring full intensive care treatment.
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)… we are sure that what we are doing is based on kindness and love… and we believe 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.
Please watch the attached videos… they show how beautiful and happy little Batya is…. They also show the work load of 80 procedures around the clock every day…. It is interesting to see…
Once again thank you so much for your time, love and donations..
All our love and thanks
Naffi, Racheli and Batya xxxx
This video shows some beautiful and happy moments with Batya....
This video shows 24 hours care of Batya...... speed up version... :)