Please, if you are a parent I ask that you put yourself in my shoes, if only for a few minutes. You have the opportunity to change a very young girls life forever.
Today I am looking for Angels to help an
Angel, my precious 3 year old daughter “Hati”.
Hati came into this world fighting an uphill battle where everyday that she is with us is a blessing.
Hati is a twin sister and both were born 10 weeks prematurely. As a result of being born premature she has taken on a list of ailments that put her at a very high risk. Of the many health issues that she struggles with each day one is a Tracheostomy where she is required to to have 24 hour care, has endured countless hospital visits, numerous surgeries. At any time she is open to infection so her playgroups and visitors are very limited.
As a mother I can tell you that one of the most incredibly difficult things to do is to give or witness your child lifesaving CPR which I have had to do 6 times at home, twice in a hospital, and once from cardiac arrest.The brighter side of things...There is treatment available overseas that we feel could make a huge difference in her quality of life, possibly life saving for Hati. Cutting edge Stem Cell treatment.
Overseas Stem Cell treatment has been conducted for over 10 years and is a regeneration treatment that has had great results for patients, world wide.
Hati would under go a procedure that would include - MSC cells collected from her bone marrow then injected into the areas of the airway that need help; From one parent to another, if my story impacted you in any way can you please make a donation. Every donation no matter how small or large will be incredibly appreciated. If you cannot donate I kindly ask that you share my daughters story with your friends and family within your social circle, perhaps someone that you know can help us.
Thank you so much for taking the time to read our story, myself, Namaeya and Hati are sending you love and are immensely thankful.
Below are the links of our a short video on Hatihttps://youtu.be/4YujL5ONUREThe medical world label Hati as "complex"We have had many failed attempts in removing the trachesotomy resulting in Cardiac arrest, respitory failure requiring CPR.
We would continue to live day by day with the fear her next acute event may take her life.
I am passionate about Hati beign trachy free and like other children live a full abundant life.
Your gift of love will allow Hati to access treatment in India. Your gift of love will get Hati breathing without any devices
As the mother of Hati and Namaeya I am bound to do the best for my family. My family is the greatest gift of my life. The journey has been horrendous but it has also been indescribably wonderful.
Maybe at times I am being fuelled by that trusty friend, denial, which fuels my spirit to never give up in getting my daughter trachestomy free which makes one thing clear to me, we need to go to India.
In the beginning Haati life expectancy was very short, now every day Hati lives is a blessing but it is full ofa dailiy struggles not only lfor Hati but her family also thaat many of us take for granted.
If you see someone you love suffer, of course you will try anyhting that gives you hope, and for me hope id the only thing stronger than my fear of one day loosing my daughter.
To follow or learn more about Hati you can follow us onhttps://www.facebook.com/kylienamaeyahati
I have known Hati and her family for almost three years. I began as Hati's night nurse back when she was 7 months old. I have watched in awe at how her mum, who is on her own, bravely battles on with both Hati and her twin. Hati's complex health issues mean life is full of uncertainties and at any given moment Hati could go from well to seriously unwell to life threatening. Hati has defied all the predictions of doctors to get to where she is now. I believe that the constant love and support she gets from her amazing mum and loving twin sister has given her the will power to prove that she can achieve anything. I personally have seen how far Hati has come in the time I have known her. This little girl is a brave warrior who deserves every chance at a normal healthy life.
Her mum Kylie moved from SA to Melbourne to attempt to give Hati a chance at life without her tracheotomy but sadly that has failed. Life with a Trachy is one that subjects Hati to a higher risk of infections, blockage and critical life threaten events. I know if my child had any chance of life without a Trachy I would go for it. Of course Hati has other health problems too and some of these and getting the Trachy removed is a real possibility if she can get to India.
I hope that people will dig deep to help this family give Hati the chance she deserves - what they all deserve.
Having known Kylie, Naemaya and Hati for a couple of years now, I have watched on in complete awe and admiration of the fighting spirit within little Hati as she endured challenge after challenge in becoming healthier towards the ultimate goal: being trachy free with her airway reconstructed.
Her mum and her twin sister have done so much to support and love her through so many appointments and hospital stays. Kylie is one amazing Mumma being a sole parent to these two cherubs. She packed up her life and her children to be closer to the Royal Children's Hospital in Melbourne and that goal of improving Hati's life.
Whilst the medical options for Hati within Australia are now seemingly exhausted, it is again with much admiration that I hear that Kylie has found another medical option for Hati.
I am getting behind Kylie and so many of her other supporters to help raise money to send Hati to India in 2017 for stem cell treatment, that will give her a great chance in overcoming her health issues.
Be part of something really special. Help send Hati to India.