by Catriona Taylor | Mar 15, 2024
Gracie is living with Silver-Russell syndrome (SRS) and is currently in her final year of a Biomedical Sciences degree, specialising in Pharmacology at UCL.
Q: When were you first diagnosed with SRS? What was the process like? What help and resources were available to your family at the time?
A: My family had somewhat of a working diagnosis from when I was around 6 months old all the way until I was 2. The process went from a clinical geneticist noticing some distinctive physical characteristics when I was a baby that then prompted a range of genetic tests to confirm their hypotheses.
Initially my family were offered access to the clinical genetics team in Edinburgh with any questions they may have. The charity was mentioned but due to such an large amount of new information upon my diagnosis this felt overwhelming and ultimately wasn’t something my family chose to access the support of.
Q: In what ways has SRS influenced your choice of subject and the direction of your studies?
A: I remember from a young age I was absolutely fascinated by the human body, as I got older and started to choose my subjects for my exams in secondary school I was focused on trying to get into medical school. This was definitely motivated by my experience as a patient. I knew if I was going to be a doctor I wanted to work in paediatrics to offer support and reassurance to other children having to spend a lot of time at hospital appointments like I had.
Eventually I realised that a career in medicine didn’t actually align with my interests, I was far more stimulated by the idea of learning about the theory of human biology and how all of the areas of study within medical science interact (genetics, pharmacology, neuroscience etc) so based on this I decided to apply to study Biomedical Sciences at university. I would say that SRS definitely provided the initial inspiration for where my future career could lead and I very much use it as my drive to make a difference in finding solutions for patients.
Q: What ambitions do you have for when you graduate?
A: I have always been very career driven so my main focus is looking for graduate roles, hopefully within the pharmaceutical or biotechnology sector however, I am definitely open to pursuing some of my current academic interests at a postgraduate level. Recently I’ve tried to focus more on key attributes I want in my career as opposed to landing on a specific ‘dream job’ job title. I know that I will find the most fulfillment in a career that places high importance on connecting with and educating people.
One of the motivations that SRS has given from me from a career point of view is a desire to make a difference in some shape or form and prove to both myself and potentially others that a diagnosis doesn’t necessarily limit your potential to achieve.
Q: What sorts of challenges does living with SRS bring to your day-to-day student life?
A: University life is hectic and particularly in London where the student and young professional cultures do blend into one another, I can find myself suffering with chronic fatigue fairly often. I feel particularly lucky living in London that the public transport options are vast so as a city it is very accessible and I rarely find myself having to walk too far. I live a very independent life and now being in my final year I have a really established support system around me at university. My biggest thing that I find myself having to manage is not always being able to predict when my chronic fatigue is going to hit me, I have numerous adjustments in place with the university wellbeing service that ensure this doesn’t put me at any disadvantage however, I definitely feel frustrated sometimes that I can’t do as much or I need to take a rest day. I try my best to check in with myself and how I’m feeling and then try to plan my weeks flexibly.
Q: Do you remember how old you were when you first understood you were affected by SRS? What was that experience like? Did you have a sense that you were different to your peers?
A: I think I always had an awareness that I was a bit shorter than my friends and had to go into hospital fairly regularly and they didn’t have to. I’m not sure on the exact age I would have been but my earliest memory where I remember feeling different was when I was in primary school, probably aged 5/6.
In my first year of primary school, as a class bonding activity we were asked to stick a coloured strip with our name drawn on to the classroom wall at our height. I vividly remember stepping back and realizing how far below my peer’s my sticker was. I don’t remember exactly what my initial emotions were but that was definitely the first experience that I can remember feeling different to my peers. As I’ve gotten older that sense of feeling different definitely sticks with me and is something I have to work through in my head when I’m in a new environment.
Q: Have you encountered many misconceptions about SRS in the general public? If there was one thing you wish everyone could understand about the condition, what would it be?
A: I think there are quite a few misconceptions following someone from the general public’s initial impression of me however, it’s hard to identify misconceptions about SRS due to the condition being so rare and most member of the general public wouldn’t have heard of it. When I was younger, due to being smaller most people definitely assumed I was younger than I was, as I’ve gotten older and facially matured this happens a lot less. However, I find that people do stare sometimes in public but it’s something you get used to.
I would say I have a few main things I wish people knew and are often the first things I tell people as they get to know me: one is the fact that my height really isn’t the aspect of my condition that impacts me the most. Yes I do get a few stares, find it difficult to reach things but the thing I struggle with the most is my chronic fatigue. Another massive point is that people do like to put me under the ‘dwarfism’ umbrella term, which absolutely in the right context is correct due to me being short in stature, however I do think many people expect me to have had the same experiences as someone with achondroplasia, a form of dwarfism with far more public representation and for the most part this simply isn’t the case. Finally, I genuinely don’t mind being asked a question about my condition if it comes from a place of genuine curiosity and is in an appropriate situation. In my experience giving people a little bit more knowledge is only a positive thing!
Q: One of the things that can come with living with a rare condition is feeling as though you are expected to publicly ‘represent’ it. Is this something you find frustrating, or do you enjoy the opportunity to educate people (or both!)?
A: I’ve personally never found this frustrating, in fact I feel extremely grateful to be in the position and comfortable enough with myself and my condition to share my experiences. By talking about my experience in the context of offering advice it gives me a perspective that allows me to process some of my thoughts and feelings about my experiences in a more neutral way. I find being able to share my stories, hopefully offer some support to individuals affected by the condition and also educate those who aren’t as familiar with SRS to be incredibly cathartic.
I think we often talk about representation on a larger scale like in the media or within large corporations however, very rarely is it discussed on a more personal level. The idea of walking into a room and feeling like nobody looks the same as you is an important one to address when talking about representation. On a personal level, sometimes I can really get in my own head about this but more often than not I use it as my motivation to go to events as I always think maybe I’ll make someone else in the room feel more comfortable to be there.
I would absolutely love to see more people who look like me on adverts and in films but smaller scale representation is far more important for giving people the confidence to enjoy their everyday lives.
Q: How did you first come to be aware of the CGF? From your perspective, what do you think is the most valuable aspect of the charity’s work? Are there any areas on which you think the CGF should focus more?
A: I personally first became aware of the charity when I was involved in an event with the University of Edinburgh’s Institute of Genetics and Cancer titled ‘Shining A Light on Silver-Russell Syndrome.’ Myself and my clinical geneticist Professor Mary Porteous delivered a Q&A with one another and then representatives from the CGF (Chair of Trustees Jeff Bolton and Medical Advisor Dr Emma Wakeling) shared some of the charity’s work with the audience.
I would say the most impactful work the charity does is creating a space where families can access support and ask questions that has a community and more relaxed feel to it. Currently the charity really does go above and beyond for families and patients with growth conditions however, the main thing I think would be great is if there was a way they could offer a platform in which young people could talk to each other more informally. I know this isn’t for everyone and I think even I would have been nervous to talk about how I felt with someone I didn’t know, however many young people often feel more comfortable talking to someone they don’t know as well.
Q: What piece of advice guidance would you give to a young person living with SRS? And what would you say to the parents of a child in the process of being diagnosed?
A: There are so many pieces of advice or even just reassurance I feel I could give particularly when I think of my younger self so I’ve narrowed it down to 3:
- It’s okay to be frustrated and wonder if it would be easier to not have SRS but don’t dwell on it and give yourself a hard time for something you can’t control. The reality is that most people have something going on, I really try my best to focus on the things that SRS makes me appreciate.
- Make sure you stay in touch with how you’re feeling, whether you like to write your thoughts down, talk to a close friend or just take a moment to reflect every so often it’s really important especially as you move through the big milestones of young adulthood.
- This last piece of advice is particularly directed to my younger self; please don’t be afraid to take up space just because you don’t see anyone who looks like you doing the same. If you have something you want to achieve, you are more than capable and deserving of the opportunity to chase after that.
In terms of advice I could give to parents of a child, I asked my mum what she thought and from everything she suggested this was the piece of advice she would give that resonated most with me. It’s really important, particularly in the early days, to take everything one day at a time as it will feel like a lot of information to take in. You need to recognise that it is a life changing diagnosis for the whole family/ your child’s support network and it will affect everyone in different ways.
Focus on the positives of what your child CAN do and try to give them enough confidence to go out into the world. Make sure as much as you can to equip them with the tools to cope with the challenges of the world, as young people they have a world of potential to fulfill that shouldn’t be limited by such a diagnosis.
by Catriona Taylor | May 11, 2023
Guinness World Record holder Rumeysa talks with the Child Growth Foundation about her work to raise awareness of overgrowth condition Weaver Syndrome
How many Guinness World Records do you currently hold, and what are they?
Currently I hold 4 Guinness World Records titles: the tallest living woman, the largest hands (female), the longest fingers (female) and the longest back (female). I’m also the former holder of the tallest living female teenager title.
Do you remember how old you were when you first understood you had Weaver Syndrome, and how you felt at the time?
I was around 5 or 6 I think. I have never felt bad or upset about it because my parents taught me that Weaver Syndrome (WS) is what makes me unique. I was amazed when I found out that I am the 27th person diagnosed in the entire world, and even I myself started researching to learn more at such a young age.
Given that Weaver Syndrome is so rare, do you feel an obligation to be a spokesperson for the condition? If so, do you see that as a burden or a benefit?
I didn’t feel that I’m obligated to, but I really wanted to do this. I always knew WS is quite rare and there are just a few people with it in the world. So I wanted to inform others and spread awareness. I’ve been voluntarily advocating for WS since I received my first ever Guinness World Records title 9 years ago and this gives me honour!
What sort of physical support and equipment do you rely on in everyday life?
I get around in a wheelchair most of the time and can walk with a walker for short distances.
You must get asked the same questions over and over again – what question are you most sick of answering?
As you know, one of the most common features of WS is a deep voice. Obviously I have that, too! However, many people can’t figure out the reason and often ask me ‘What’s wrong?’ with my voice!
In what ways did having Weaver Syndrome affect your teenage years?
In order to stop my overgrowth, I received a medical treatment from age 6 to age 9. The purpose of this treatment was to start my puberty via giving a high dose of oestrogen into my body and then end it after enough time. So I was going to be able to reach my adult height as soon as possible and it would be the minimum. So, even though it sounds a little crazy, my puberty process started when I was 6 and ended when I was 9.
So as a result of this, in my teenage years, I already had an adult woman’s body. I know this could be traumatic for a child at that age but my parents, who also have a medical background, did a great job of explaining the whole treatment and situation to me. So I never remember that I felt scared with what was happening.
What sort of impact has it had on your professional life?
I’m a web developer. I chose this profession not only because I have always been interested in computers and technology, but also as I thought that having a career in tech/programming would be the most suitable one for me since I have physical disability due to WS. I really wanted to follow a career path that I will be able to perform as a job and these type of fields have a lot of remote work opportunities, so I thought it would be a huge advantage.
Your long-haul flight to the US in 2022 required adjustments on the part of the airline to enable you to travel comfortably. Can you describe the experience of researching travel options and explaining your needs to the airline? Were they understanding?
I was born with scoliosis which is another feature of WS. Even though I was operated for that when I was 17 years old, I still have some curvature and carry 2 rods and 30 screws in my spine. That’s way I can’t sit longer than 2-3 hours at once and then I need to lie down and take a rest. So my only option to be able to travel from Turkey to California was flying on a stretcher.
Traveling on a stretcher is not a process that can be easily arranged. Usually it is used for passengers in a medical emergency situation. As far as I know this was the first time ever that this option was used for a tourist passenger.
So the entire process required a lot of research and preparations. I contacted Turkish Airlines, as it is one of the very few airlines that provide a stretcher option. In order to make this journey happen, they had to close six seats in the economy class of the plane and place a stretcher on them.
At some point in our discussion, this turned into a PR trip with Turkish Airlines. Everyone working there was super kind and helpful, and put my safety and comfort first.
How are you enjoying life in California? And what is your everyday working life like?
I’m definitely living my best life here. California, especially compared to where I live in Turkey, is way more accessible which is a huge benefit for me. I have been exploring Bay Area for the last 6 months, and recently spent a week in Los Angeles which was an experience I enjoyed a lot!
You have obviously faced a lot of obstacles and adversity in your life, how do you manage to stay positive?
I always had dreams and goals, and I knew that I can achieve them with hard work and dedication. Thanks to my family’s endless support, I have never let negative thoughts hold me back. Plus, being a 5 times Guinness World Records holder and a public figure are what keeps me motivated and going.
What advice would you give a young person coming to terms with living with Weaver Syndrome, or another overgrowth condition, such as Sotos Syndrome?
Your syndrome doesn’t define who you are as well as your talents. Always be aware of your potential, set goals for your future and do your best to achieve them.
What ambitions do you have for the future?
I have so many things planned to achieve in the future. In general I can say that I’m building a future for myself where I can live my life as independently as possible in the place I dream to live.
Is there anything else you’d like to share with members of the CGF?
Thank you for having me. It’s a privilege to share my story with you. I hope my story could inspire you and your children in one way or another. Keep fighting, being rare is precious!
Huge thanks to Rumeysa for taking part in our Q&A, and for helping to raise awareness of Weaver Syndrome.
To find out more about Weaver Syndrome and to access our support and information here on our website or contact our support line on 020 8995 0257 or at [email protected].
You can follow Rumeysa on her Instagram @rumeysagelgi.
by Catriona Taylor | Jan 5, 2023
By Freya’s mum Krista, November 2022
Recently my husband and I had the opportunity to attend the Child Growth Foundation Convention with our 17 month old daughter Freya.
We were taking her to meet her UK family after being cooped up in Australia during our Covid lockdown.
It was absolutely amazing to meet families who have shared similar experiences to ours, and we made a bunch of new friends. My husband did find it quite confronting though, when he realised just what Freya’s future might look like; he hadn’t done as much research on RSS as I had, and hadn’t realised quite how life-changing a diagnosis it can be.
My pregnancy was going well until week 28. During a routine growth scan the doctor became very alarmed when Freya suddenly dropped from the 10th percentile to the 3rd! We had a lots of scans in the hospital that day and shared a look of horror when the consultant “reassured us” that we wouldn’t need to have the baby taken out that day…
We made it to 37 weeks before Freya was born via caesarean section at 2.2kg (4.8 lbs). Right from the start she had problems feeding, she had EBM with top up formula and was just not gaining weight.
However, after a week all alone in hospital with her during Perth’s only Covid lockdown I’d had enough and begged to be allowed home. She gained 30 grams the first day out, probably just being away from the stress ????
She continued to have very slow growth and was extremely unsettled – after 4 months she was switched to different formula as she was CMPI. Then she started actually sleeping a bit. Hallelujah!
We visited the Child Health Nurse and Emergency room so many times when she stopped feeding and got sick, and spent a fortune on hospital parking during her inpatient stays… it was a very stressful first year!
Eventually we were seen by a lovely paediatrician at Perth Children’s Hospital, who asked if anyone had mentioned Russell Silver Syndrome to us.
When I Googled the list of symptoms we actually shed tears in the hotel cafeteria as we realised Freya had almost every single symptom!
Discovering that there was a reason she was failing to thrive, why she looked so different to other babies and why she was so late to crawl and walk was such a relief.
Although it was tinged with fears for her future, which is why it was so important to meet other RSS families at the Foundation.
Now Freya is 19 months and finally has her first few teeth. She’s almost running on her tiny feet! She is wearing age 9 months clothing and constantly surprising people with her cheeky attitude. We are still waiting to see if we get genetic confirmation of RSS and another condition called ectodermal dysplasia, but we know that while she may be small she is certainly a huge character who is going to leave her own mark on the world, no matter her size and appearance.
Our visit to the CGF Conference really opened our eyes to the world of kids living with these growth conditions. We came armed with a huge list of questions, and got answers to everything. Growth hormones, genetic test, feeding, injections – there was someone there to talk to about every aspect of Freya’s situation! We came away much better informed… and with yet another list of questions, this time for our doctors in Perth!
Thanks to the Conference we learned about a whole range of possibilities for Freya. Whilst her development may be slow and slight, her future will full of love and support – and the best options our health service can provide.
by Neil Hunter | Jun 27, 2022
For a recent IUGR Awareness Day (Intrauterine Growth Restriction) we are fortunate to have a guest post from Susanne Remic, GhostWriterMummy. For anyone who has read her blog, you will know that by talking about her pregnancy experiences and campaigning for better support, she helps countless others going through similar experiences. In recognition of this, she was a finalist at this year’s Tommy’s Awards for Mum’s Voice Award. This is her IUGR experience.
At 29 weeks gestation, we were told that our 4th baby wasn’t growing as well as had hoped. We’d had a growth scan due to previously having had two SGA babies, and the hospital had wanted to keep an eye on us as a result. We honestly thought that this growth scan would show a happy, healthy baby too, just like the others.
I remember that the air inside the doctors office felt so still as we waited for her to come through following the scan. I was perched on the end of a bed, feet dangling over the side. My husband was standing awkwardly, commenting on the lack of seats for dads. A normal day. Feeling normal. Smiling. And when the doctor swept into the room, we had no idea what was to come. There was no way we could have anticipated what she was going to tell us.
We’ll try and get you to 34 weeks.
We’ll deliver via c-section and baby will go to special care.
You’ll need to come back every two weeks to monitor growth.
I felt the room slide. The air was rushing from the room and the words weren’t making sense. But I was supposed to be having a VBAC! I wanted to go the whole hog- 42 weeks was the norm for me. Not 34! This baby was supposed to be small, but perfectly healthy. None of this was supposed to happen this way!
When we left the hospital, I started to google low birth weight babies and four little letters kept popping up over and over again. IUGR. Horror stories of tiny babies, too small to fight to be alive. Too weak. Born too early. I searched for blogs to read so that I could get a better understanding of what we were facing. I joined IUGR support groups on Facebook. I craved information but there was really very little that anyone could tell me.
At our next scan we were told that reduced blood flow was depriving baby of essential nutrients and oxygen, and this was probably the reason why she wasn’t growing. We were told to come back weekly so that they could monitor us closely.
Medically speaking, the care we were given was second to none. Emotionally, I am still paying the price today, 18 months on.
Google was not a good place to be. As my hand rested on my tummy and I willed my baby to move, Google was most definitely the very worst place to be. I read story after story of babies born too early and too small. Babies facing a lifetime of disabilities. Babies who never made it home. And as each growth scan showed us a baby that still was not growing well, the fear and anxiety we felt began to escalate. Nobody could give us any answers and while we understood the reasons why, we were still frustrated and scared.
If our baby was going to need special care, how would we know where that ward was in the hospital? What would happen in there? Would I be able to stay? Would we be transferred to a different hospital closer to home? Would there be any lifelong disabilities for our baby? Why was she IUGR? Was it something I had done wrong? The medication I took to stop the sickness? Did I eat the wrong thing? Too much? Not enough? Should I rest more? Or move more? Should I prepare for the worst? Was my baby even going to make it? Was there a genetic reason for her IUGR? Would there be something one, maybe even two years down the line?
And while our questions couldn’t be answered, we had nobody to even ask them to. Nobody to hold our hand. Nobody to tell us we’d be ok. Nobody to listen.
The IUGR support group on Facebook literally saved my sanity. Writing about my pregnancy helped so much too. Not only was it an emotional release for me, but it encouraged other women to get in touch and tell me their stories too. Some babies made it, and some didn’t.
I had to focus on MY baby. Getting through to 34 weeks, and then to 37. That first cry in the operating theatre as she was plucked from my body. That first feed. That first smile. First laugh. First steps. First word.
She is here. We are here. And we are slowly finding support too.
There is now a UK Facebook group for parents of IUGR babies and I hope that the members find it of comfort during what can be a terribly lonely and confusing time. There is also the Child Growth Foundation, a charity who reached out to me recently to provide support and advice. The support is out there if you know where to look. I hope to be able to signpost that information and support so that other families that walk this path do so with a light to guide the way. IUGR can be a terribly lonely and frustratingly scary path; I don’t want other families to walk it alone like we had to.
by Neil Hunter | Jun 27, 2022
“Little did they think that at 18 months, their daughter would be diagnosed with the onset of puberty.”
When Holly’s daughter entered early childhood, she noticed puppy fat around her daughter’s breast area. After much discussion, Holly and her partner decided to check it out. Little did they think that at 18 months, their daughter would be diagnosed with the onset of puberty. But this would not be the only diagnosis their family would receive.
Four months into our relationship me and my now husband found out we were expecting another bundle of joy. Already parents to two girls each from previous relationships, at our 20-week scan we knew that our little baby was going to be another girl. This was confirmed by the sonographer and we were elated. Due to already having four girls we knew exactly what treats were in store for us and what to expect. Well, this is what we thought…………
Our daughter was born in March 2011 and we were simply over the moon. Weighing a healthy 8lb 10oz she was a normal chubby, bouncing baby girl and nothing seemed out of the ordinary. As she grew and started to become more active, her body frame started to slim down leaving her chubbiness behind. This is when we noticed what we thought was puppy fat around her breast area. Chatting to my husband and family members with daughters, it became apparent that maybe it was worth getting her checked out by a doctor.
Initially the doctor was not concerned but, as precaution, sent us along to the endocrine consultant at our local children’s hospital. We were not told anything by the GP just that he thought it was a condition called ‘Thelarche’ which is the onset of female breast development. We didn’t really think anything of it and thought maybe it was extra oestrogen that was exchanged at the time of our daughter’s birth.
When we were greeted by the consultant she weighed our daughter and also took her height. She agreed that our daughter was over the percentage she should be when it came to both of these measurements and quickly discussed a condition called Central Precocious Puberty. It wasn’t a long discussion more a passing comment and booked our daughter in for the following week to have blood tests to check her LH and RH levels to determine if she had the onset of early puberty.
This was such a distressing thing for her to go through at the young age of 18 months; however, we are so glad that we went with our gut instinct to get her checked as 5 weeks later she was diagnosed with the onset of puberty.
“This time for us all, as a family, was heart wrenching waiting to hear the results felt like weeks not days.”
e were so devastated and of course started googling the condition and reading horror stories of how tumours pressing against the pituitary gland could be the cause. After the diagnosis, our daughter started hormone injections every 28 days and was sent for an MRI scan and a scan on her uterus.
This time for us all, as a family, was heart wrenching waiting to hear the results felt like weeks not days. The results came back and nothing showed up on the MRI; however, her uterus was the size of an eight-year- old girl. More bone scans were done on her wrist to check her bone development and yet again proved to be older than her years.
Our daughter is now 5 years old and is doing great, still visiting our local hospital for hormone injections every 28 days and has built up a great relationship with the endocrine nurses, she has almost become desensitised to the injections now and takes it in her stride. I tell her she has them because she is special and to keep her little. She does, however, still continue to have mood swings like a pre-menstrual teenager. She can lash out and has real trouble sleeping at night, which appears to be a side effect from her hormone medication.
She needs personal hygiene care during the night and can show some teenage girl traits; greasy hair, outbreaks of spots and body odour. Pubic hair has also become prevalent as time has gone on.
This condition has been hard to get a grasp of. There isn’t a lot of information online and all appear to be from American sources where they use different medications to medicate with.
Our daughter will stop treatment at the age of ten and hopefully go on to have a normal menstrual cycle, although I do worry what the future will hold.
“After a GP referral, consultant appointment and blood testing our worst fears were confirmed; my daughter had started puberty at 7 and a half years old!”
This condition has been a big part of our lives and although manageable hit us with another bombshell in winter 2013. At the age of 7 and a half years, my biological daughter from my previous relationship came home from school telling me that she had found blood in her knickers. On closer inspection it appeared to be period blood. I was completely beside myself thinking, ‘not again, what have my family done to deserve this?’ Trying to hold back my tears and console my daughter at the same time was just unbearable.
I called the endocrine team who informed me that I would have to go through the GP for a referral. I am not going to lie, I was upset at this and wondered, that with another child with a rare condition and the same symptoms, why could they not just see us straight away?
After a GP referral, consultant appointment and blood testing our worst fears were confirmed; my daughter had started puberty at 7 and a half years old! After numerous discussions the consultant gave us a choice whether to let my daughter continue to menstruate or to medicate her with hormone injections. Apparently it’s considered normal for a child of eight years old to start menstruating.
We went home that day trying to fathom how to discuss this with my daughter. She hates needles and really was against the idea of monthly injections, however, as parents we felt like she wasn’t mature enough to have a period and have to deal with that every month (it’s bad enough for us as women). We all agreed that the best thing to do was to start treatment asap and her biological father agreed with this, too.
Obviously, being that much older than my younger daughter, I had to sit down and explain why periods happen. Something that I didn’t want to do at such a young age, however, it was appropriate for us as a family. Even my six-and- a-half- year-old daughter was intrigued.
My eldest daughter continued with the injections for two years but, unfortunately in November 2015, started bleeding again, breaking through the injection. It was decided that in my daughter’s best interest, she would come off the injections as she really did struggle with them, although they were moved to one every 11 weeks they just were not having the desired effect. This was due to her weight and height. She hasn’t had a period now since January 2016 but, her mood swings are all over the place. She looks a lot older than her years and her body shape is like a curvy woman’s.
Although this condition has been a big part of our life we cannot thank our lucky stars that we pop into the hospital once a month and get to bring our daughter home after her treatment, something that other parents aren’t so lucky with.
