Challenges won't defeat this Hemophilia mom: Lilian Hollington

When a child takes birth, a mother is born too. Lilian, is a mom from South Africa. To be more precise, a Hemophilia mom.

This mother came to know that she is a Hemophilia mom when her boy reached six months of age. Her little one used to get bruises, and it took seven visits with the crying baby to Red Cross Children's Hospital to finally get a diagnosis of Hemophilia.

Like any other hemo mom, Lilian had a million questions running through her mind.How to manage Hemophilia? Will I be able to provide all the care he needs? Will my boy be able to grow up and enjoy life like any other kid?

Bringing up a kid with Hemophilia is a little different. The challenges change as time moves on. When they start crawling, they may bruise their knees and elbows, and may get swollen joints due to bleeds.Most moms cover up all the sharp edges of furniture. When they start walking, they fall down or  walk  into doors and walls,and  bleeds from lips and bumps on forehead are common. But trying to stop them from their activities would be the worst thing to do. Lilian still laugh at the memories of her son untying the belt his gran tied around  his waist and running away, his gran chasing him.

When they reach preschool and school, another set of challenges arise - creating awareness about Hemophilia among teachers and peers.Lilian tried to explain Hemophilia stating that it was a blood disorder. But, that made people think that it was something like HIV and parents forbid the boy from sitting next to their kids or playing with them. She had to put in a lot of effort to assure that Hemophilia is not contagious and to eradicate the fear of contracting HIV from them. She realised that ignorance is not a bliss always.

Lilian even had to face accusation  of abusing her child one day from a total stranger at the sight of the massive bump and bruises on her boy's face.

The challenges grew as he grew older. He wanted to live normal and participated in every sport and used to spend lots of time together with his dad, his hero. But, those days did not last long, the family lost their man and the little boy lost his hero when he was just eight. The day her husband was laid to rest, Lilian gave birth to another boy, thankfully he didn't inherit the disorder.

Lilian and her mother gave their best to raise the kids, giving them all the love and care.
Hospital visits reduced  only to times of emergency as they started infusing at home.

Lilian met a wonderful man and got married again.He loved the boys very much and filled the void created by the loss of their dad.

Speeding to the emergency room is not uncommon in a Hemophilia family, and during one such episode, they were caught in riots . She  drove alone, through burning tyres with a badly bleeding son. She also had an experience with a hijacker attempting to hijack her car with the two boys sitting in the back. Prayers and presence of mind saved them from the attacker's knife.

Once, they went to a holiday in the country. Her son hurt himself very badly and they were forced to vacate the hotel they were lodging in. However, God's grace, the Hotel's manager, a gentleman, invited them to his home, which was close to the hospital.

 New places, always have come with a new set of rules.At hospitals in the country there were still segregation.Her husband took her bleeding son to the supposed "wrong " side as he was able to go there but the  boy  was denied treatment. He kicked up a storm and got the best care.

Yes, life will be full of challenges. Face them, with strong will and determination, the challenges will not be a challenge any more.

This mother , faced the challenges and challenged them, and that gave her kid a good life.

Salutes to the super hemo mom, Mom of Kurt Higgins, Lilian Hollington.

Compiled by : Hemant Naidu Pulijala, Dr.Anupama Pattiyeri
                         Team RedLegacy

Dr. Parth S Thacker, Hemophilia-A with inhibitors From Gandhidham-Kutch, Gujarat,India Currently doing MD in Ayurveda at Jamnagar,Gujarat,India

Living with Hemophilia: Facing Struggles, Developing Strengths

Imagine a little boy, who has just started understanding things; who has just started observing the beautiful world around with curiosity; who has just entered the age which he will be able to remember as his childhood years later. The boy comes to know that he is a part of this world just like anyone else. But there is something different for him. He is a little different from others. Different by what means? Technically merely a single blood component (which is known to us as- "Coagulation Factor VIII") is not produced in the body. And what difference a single blood protein can make? Hahahaha.. You all probably know the answer. Imagine his reactions when for the very first time he realized his inability to play his favorite outdoor sports. What would have happened to his innocent heart, when he was supposed to only watch those playing, falling, again playing and enjoying children outside on the ground- from the balcony of his home? A person’s body is the most useful tool to live, to be happy, and to make more and more experiences which life offers. How heartbroken he would have felt, when he had tried to swallow the fact that he does not have the same helping “body”, instead he has got the body which probably is going to continuously place obstacles in his journey. That kid was me, many years ago.

Yes, I am a person with hemophilia. As every little child, I could not accept the same. Every time I got joint bleed episodes- mostly with intense pain, I asked to the existence, “Why me?” And believe me, life-journey with Hemophilia, is indeed, not easy. In terms of video/Pgames, we play the game of life with a very high difficulty level (I would not say “Highest difficulty level” because I know there are many other serious life problems for many people there). But surely, it is never easy. You/people around you continuously care about your body, your health; even then it betrays you many times. At every phase of your life, you have to fight with your health, often coming into the way of your dreams, being happy, life-goals or whatsoever.

Fortunate I am, that I have got loving-caring parents and family, who always inspired me, who kept faith in me and made me have faith in myself. We always talk about the difficulties PWHs face, but we often forget to think about the family which is upbringing a child having Hemophilia. My family has played a tremendous role in making me whatever I am today. Many times, when I lost all the hope and had emotional extremes, they have always supported me. They never lost hope. They helped me best in overcoming my limitations and living my life in the best way I can. They took intense care of mine, but they made me trust myself and my dreams. They took care of every single wish of mine. It is due to my parents and family that I have reached at post-graduate level in Ayurveda.

But still, my story is incomplete without Hemophilia Society- Rajkot Chapter. The role Hemophilia Federation plays in the life of a PWH, deserves salutes. Particularly, I am lucky to be a part of Hemophilia Society- Rajkot Chapter. I still remember when I heared that soft, full-of-love-and-concern voice of Kiran Avashia Sir for the first time. If life with Hemophilia is a sea full of storms- Federation and chapter play the role of lighthouses. Had we not got the proper guidance, awareness and support (of every level) by Rajkot Chapter, we’d lead nowhere in life. Their active efforts for encouragement of every single person with Hemophilia, continuous uplifting of their quality of life, rehabilitation of their families- are blessings for the PWHs as well as for their families.

If I talk about my journey with Hemophilia, I must say, it’s a thrilling experience. Accepting Hemophilia as a permanent companion was never easy, but eventually as years passed, now it feels like it is not that hard. Yet, starting phase is always tough, that too if you belong to a remote area like Kutch. But life has always planned better for me, I have started believing now. Before starting school, I had become fond of reading a lot. And I must admit, reading and literature ignited my love for philosophy too and inspirational, motivational (true) stories helped me the most in changing my mindset, my attitude towards my difficulties. I started schooling and learning lot of new things and was equally interested in both- curricular and extra-curricular activities. From childhood, I was too much interested in music and reading, and in school, I got platform for the development of those both important parts of my life.

 My wish was to become a doctor that I took admission in BAMS (Bachelor of Ayurveda Medicine and Surgery) in Nadiad. After UG, I was interested in Masters, therefore I applied for it last year and fortunately got admission in IPGT & RA, Jamnagar- one of the most dreamed PG institutes in Ayurveda field. Now I am studying here as an MD scholar and obviously, I want to contribute something significant from Ayurveda, to Hemophilia World. I show gratitude towards each educational institutions I have been part of (and their faculties too) for the utmost support and love that they have given to me.

Now something I want to say to my young, fellow “Blood Brothers”. We are not no-normal kids, we are “Special ones”. You are unique, because you are different. You must give up the thought of being helpless. Getting misery or not, is not in your hand. But, whether to be miserable or not, is completely in your hand. Once you accept whatever you are, you can do whatever you want. Forget the things you can never do (every person in this world has some limitations, we too), give your best for what you can definitely do. Difficulties will either ruin one’s life or will make his life outstanding. Both results are equally possible, and which result you get- depends completely on you. Life has given me a lot of beautiful things. Loving parents, caring friends, compassionate mentors. I no longer ask anyone, “Why me?” because when I get lost in amazing world of a movie or a book, or when I play music on my keyboard or guitar, I find myself the luckiest person on earth. I have no regrets regarding Hemophilia anymore. Even when I was diagnosed to be having inhibitors for factor VIII 2 years ago, I didn’t feel any type of grief or misery. Surely, I want inhibitors to be eradicated from my body as soon as possible, but till then I will not be in sorrow. I love every moment I live, every breath I take and I love my life. World’s smallest and biggest pleasures are waiting for you. Just forget the one thing and you will feel “Normal”, because, being normal or not, is just a state of mind. Once you accept your limitations and start focusing on your abilities, a warrior will definitely emerge from you. Make your life, a “celebration”, because as a quote says, life is beautiful with conditions
applied.

At last, I heartily appreciate efforts of our Government for the commitment they have shown for the healthcare of PWHs. When I had gastric bleed in December, 2013, I was admitted in Civil Hospital Ahmedabad. My Haemoglobin level had fallen upto 4.8 gm% and thankfully, I got treatment at emergency bases there and I was given 3 doses of 6 mg Novoseven that time (because of having inhibitors). For that, I will be grateful to our Government and the doctors who treated me there, for the rest of my life. Though I feel that the length of the time an average PWH faces at hospitals for treatment (due to so-lengthy official procedures), should be shortened as time is a critical factor for us to get treated well with least complications.

At the end, I thank Kiran Sir andHemophilia Society- Rajkot Chapter for giving me this opportunity to share these things with you.

I end up with the quote by Elizabeth Kübler-Ross: “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss and have found their way out of the depths. These persons have an appreciation, a sensitivity and an understanding of life that fills them with compassion, gentleness and a deep loving concern. Beautiful people do not just happen.”